The Peanut Butter Falcon movie poster next to the cast and crew of the movie

'The Peanut Butter Falcon' Stars Zachary Gottsagen, an Actor With Down Syndrome

2k
2k
0

A new adventure movie is currently in production and it stars Zachary Gottsagen, an actor living with Down syndrome.

“The Peanut Butter Falcon” tells the story of a young man with Down syndrome named Zak, who runs away from a nursing home to pursue his dreams of becoming a professional wrestler. Tyler, a small-time outlaw, played by Shia LaBeouf, becomes Zak’s coach and ally as they make their way to a school for wrestlers. The film will also star Dakota Johnson and Bruce Dern.

The role of Zak was inspired by Gottsagen, who met the film’s writers, Tyler Nilson and Michael Schwartz, while they were working at a non-profit arts organization. Gottsagen previously appeared in “Bulletproof,” a 2012 short film about saving a family business, as well as “Becoming Bulletproof,” a 2014 documentary about the film and the importance of casting actors with disabilities.

“I work and make films with Down syndrome actors. Many of them struggle to maintain a regular life, not because of their disabilities, but because of others disbelief in their talents,” Nilson said in a statement, adding:

I have had many friends with Downs placed in old age homes because of lack of proper care. I know how beautiful freedom is, and I know what it feels like to be locked away as well. I am grateful I know that freedom in the outdoors and my heart aches for my friends with Down syndrome who touch only linoleum floors and plastic all day. I am not making this film for them. However, I am making it for the people who believe it is ok to dismiss them and lock them away. Prejudice towards Down syndrome is costing a lot of young people good years of their lives. Everyone should know what it feels like to go a little wild, even if you’ve got an extra copy of chromosome 21.

“The Peanut Butter Falcon” is scheduled for release in 2017.

The Mighty has reached out to Lucky Treehouse for a comment and has yet to hear back.

2k
2k
0

RELATED VIDEOS

JOIN THE CONVERSATION

My Son Is Not Brave Just Because He Has Down Syndrome

170
170
0

We had a “first” this morning, a comment from a customer at out store that took me slightly aback.

I haven’t had many comments regarding Down syndrome, other than a few “you can’t even tell” in the beginning. I usually get comments about how cute my children are, how happy they seem, how well behaved they are and the fact they have lovely natures. Is there a bigger compliment than someone saying you have lovely children? I’ve never had a bad exchange, and I’ve definitely never had anyone be purposely mean or disrespectful. Hopefully I never will, but who knows.

Me and my husband, Reagan, were talking and I mentioned I didn’t think that people really watched us. I mean, I never really see anyone staring at us. His said he sees people watching us all the time and that I’m just oblivious to it. He told me he often sees people watching me with the boys, in particular, River. I had no idea! He also said he feels proud when he sees me wrapped up in our own little life and not noticing that people seem to be drawn to it. Probably one of the best compliments he could have given me because it’s exactly what I want to teach my boys, to concentrate on living their lives and being happy.

We smile at people and say “hi,” we are friendly and I often start conversations because River is determined to high-five random strangers. I certainly don’t have a guard up or worry that people notice River has Down syndrome. I couldn’t care less about that, I actually hope they do and see what a great life he has along with it. I hope they see Down syndrome isn’t limiting him and it isn’t “the end of the world.” Far from it! It never really crosses my mind when we are going about our everyday lives that people notice River is “different,” and I guess that’s because I don’t see or think about him as “different.” Our life is our “normal,” it may be unique to other people but to us it’s “normal.”

My husband also said he has never seen anyone look at us in a negative or disrespectful way, it’s always in a curious way. That is completely fine with me and is actually exactly what I want. If anyone is learning something from looking at us, then look as much as you want. Society needs to see families like mine getting on with living our lives, they need to see we are a “normal” (there’s that word again) family, living a “normal” life. Especially here in Tanzania where so many children with disabilities are hidden away in shame. Our friend, Abuchu, spent 30 years of his life locked in a tiny dark room, never leaving it just because he has Down syndrome and his parents were ashamed. I want to show families here that their children can live great lives and they deserve to be given that opportunity. It breaks my heart to think that some parents believe they have been cursed or are being punished by God; that they see their own children as a “vengeance.” Neither of my kids is a “punishment,” River and Skyler are the best things to ever happen to me!

So this morning’s comment wasn’t a bad comment, the lady who said it was lovely and meant no offense at all. I’m sure she would have been horrified if she thought she’d said anything to make me feel uncomfortable.

We were in our store and she came in to buy some gifts. She noticed River, and after he forced her into a game of rolling the car back and forth we got talking. Everyday things, the weather, her trip, how long I’ve lived here, etc. As she was leaving, she held River’s face, kissed him on the cheek and said, “you are such a brave little boy.” It hit me like a brick and made me feel instantly uneasy. It communicated she felt sorry for him and our circumstance, and pity is the one thing I don’t deal with very well at all. So in true British fashion I inserted a bit of humor and told her we luckily hadn’t had to test his bravery yet, as the biggest health complication he’d had was a severe case of constipation.

Looking back though, making light of it made her comfortable enough to ask me questions about Down syndrome and what it means for our family and for River. I love the fact that she left with a bigger understanding and a whole new opinion, and she understands now that our children are not suffering because they have Down syndrome. Our exchange actually reinforced everything I already believe, that most people who may say the wrong things have no idea they are saying something that you find offensive; they mean no harm. Most people have good intentions and I don’t believe we help anyone by being on the “defensive” all the time. I don’t believe we help our children by building barriers around ourselves.

I’m not saying that no children with Down syndrome are brave. There are children who have heart conditions, leukemia and other life-threatening conditions and they are incredibly brave every single day. Some of the bravest people I know have Down syndrome. There are also families who are incredibly brave and inspiring, and I hope my own braveness is never tested in the same way.

Having Down syndrome does not make my son brave. He’s feisty, fearless and determined, but right now his braveness is limited to climbing as high as he can, catapulting himself over the back of the sofa and quickly swiping his brother’s last bit of cake and shoving it in his mouth! He’s not in any way suffering and has a very happy and blessed life. I do, however, hope he grows up to be a brave man. Just as I hope his brother, Skyler, will grow up to be a brave man. I hope they are brave enough to fight for what they believe. I hope they are brave enough to choose love and kindness, and not hatred and anger. I hope they are brave enough to take risks. I hope they are brave enough to follow their dreams, and in River’s case even if society doubts him. I hope they are brave enough to turn their backs on the division in this world and any negativity.

I hope that River is brave enough to prove the world wrong.

We want to hear your story. Become a Mighty contributor here.

170
170
0
TOPICS
,
JOIN THE CONVERSATION

How Medicaid Keeps Families Together

3k
3k
1

My daughter Leah was not quite 24 hours old when I overheard the pediatric surgical team discussing her case in the hallway of the neonatal intensive care unit. “Look at her — are we going to do a repair on this tiny baby? No — it will be at least five months before she’s ready.” Leah was born two months early, with Down syndrome, two holes in her heart, a congenital diaphragmatic hernia, and long-gap esophageal atresia, a rare condition in which a large portion of the esophagus is missing. She would not be able to leave the hospital until the esophagus was repaired. Her first surgery, to place a feeding tube directly into her stomach, took place when she was 2 days old and weighed just over three pounds.

Leah stayed in the ICU for seven months. We brought her home on oxygen, a feeding pump, steroid treatments via nebulizer, and methadone to wean her off of the extensive regimen of pain medications, sedatives and paralytics that had been required to immobilize her for nearly two weeks following her esophageal repair.

In the year after Leah came home, she averaged seven to 10 doctor and therapist visits per week and spent the equivalent of another month in short hospital stays. Today at almost 4 years old, Leah still relies heavily on her feeding tube, and requires hours of speech, occupational and physical therapy each week in addition to her preschool special day class. She has been in the operating room 21 times and has undergone 33 procedures during those OR trips.

Despite her complex and challenging medical history, Leah is a happy, beautiful and thriving little girl. She likes swing sets, Raffi, tea parties and “Frozen,” and she knows over 200 ASL signs and recognizes several letters of the alphabet. She is the queen of “Head, Shoulders, Knees and Toes,” and she can Hokey Pokey like that’s what it’s all about. We attribute much of her progress and good cheer to the fact that aside from hospitalizations for acute conditions, Leah has been able to live at home, with me as her primary caregiver.

Fifty years ago, a child like Leah would be condemned to lifelong institutionalization in a state-funded nursing home for the developmentally disabled — and that’s if the doctors made the effort to save her in the first place. As recently as the 1980’s, doctors famously convinced a couple to let their newborn with Down syndrome and esophageal atresia starve to death in the NICU because it was purportedly the “compassionate” choice. If a child with Leah’s conditions did survive infancy, she would be 100 percent reliant on care providers for the remainder of her life.

But it’s 2017, and Leah doesn’t live in a nursing home. Instead I take her to her countless weekly appointments; coordinate her medical care with multiple specialists; order and organize medical supplies and equipment; prepare and administer her g-tube feeds, medications, oxygen, and nebulizer treatments; follow home therapy regimens to reinforce her skills at home; monitor her caloric and fluid intake; assist her in oral feeds and watch closely for choking and “stuckies” (the EA parent’s nickname for food getting stuck in a child’s esophagus due to poor motility); advocate on her behalf with the regional center and the school district; and make sure she doesn’t pull out her g-tube or otherwise injure herself due to lack of safety awareness. I do the work of a nurse, a service coordinator, a social worker, a chauffeur, an executive assistant, and above all, a mom.

I am able to provide all of these services to keep Leah out of a nursing home because years ago, the government realized it could both save money and improve the lives of people with developmental disabilities by shifting resources away from institutionalization and toward providing home and community-based services, including in-home nursing and attendant care.

In California, these services are administered through In-Home Supportive Services (IHSS), a Medicaid program that provides home attendant care for the elderly and people with disabilities who are at risk of institutionalization, alongside state waivers that ensure that all people with developmental disabilities can access these programs.

When a parent is unable to work full time because of a child’s extraordinary needs, the parent can be paid (at minimum wage, mind you) as the child’s in-home attendant to provide services for needs that go above and beyond what is developmentally appropriate for a typical child of the same age. By allowing parents to be paid as care providers, the state saves money it would otherwise spend on institutionalization, parents keep a roof over their families’ heads, and children receive care in the environment that leads to the best long-term outcomes.

And it should go without saying that all else being equal, kids are better off living with their families than in nursing homes. Today, the average life expectancy has more than doubled for people with Down syndrome, a statistic partially attributable to improved outcomes for infants with heart defects, but surely also the result of not warehousing them out of sight in state homes. One only has to Google the term “Willowbrook State School” to see the conditions in which some children with disabilities lived only 50 years ago.

Today many adults with Down Syndrome are able to live independently or with the help of life-skills coaching and community supports, due in large part to publicly-funded early intervention services. This reduces the number of people who become dependent on the state for complete care as adults. Overall, home-care programs are a win for everyone involved — the government, the family, and the person with disabilities.

These vital programs are at risk in the face of current threats to Medicaid. The Senate’s proposed health care bill slashes funding to Medicaid across the board, and the proposed per-capita spending caps mean that the number of people who rely on Medicaid will grow faster than the amount of funding made available for it. This poses a huge threat for waiver programs that provide home-based care to the elderly and people with disabilities. If states lose huge portions of their federal Medicaid funding, they will be forced to come up with the difference themselves, and if the past is any indication, programs for people with disabilities will be first on the cutting block — particularly programs for children.

The last time California suffered a major budget crisis, state officials attempted to slash IHSS services by 20 percent. Supreme Court-mandated protections for people with disabilities kept California from successfully carrying out this cut, which would have led to institutionalization for thousands of Californians. This time around, the Supreme Court decision — which takes into account the State’s available resources – may not be enough to save Californians at risk of institutionalization.

Vice President Hubert Humphrey once said that “the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in shadows of life, the sick, the needy, and the handicapped.”

Right now, we are facing our nation’s greatest moral test in decades. For my daughter’s sake, I hope we pass the test.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

We want to hear your story. Become a Mighty contributor here.

3k
3k
1
JOIN THE CONVERSATION

How Medicaid Cuts Would Harm My Sons With Disabilities

947
947
10

In the current healthcare debate, many people seem to think that Medicaid is a handout to able-bodied people who choose not to work. However, around 90 percent of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold for Medicaid in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations.

As adults, both of my sons (who have Down syndrome) will rely on Medicaid for their medical coverage. It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this health care debate. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan and Medicaid is cut, what would the options be? Nothing here is clear, and for families like ours it’s terrifying.

In addition to his developmental and medical needs, Ben has serious mental health needs. He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his well-being is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with combined developmental, medical and psychiatric needs are sparse. If funding is cut, it would be nothing short of devastating for Ben and our family. But we aren’t the only ones. In fact, we’re pretty fortunate so far. My husband works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self-employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one we can manage.

Today we have spectacular medical science that’s evolving and growing daily. We are able to save lives in circumstances that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected — too expensive for any but the wealthiest citizens to afford out-of-pocket. Do we reserve such marvels for those who can afford to buy them? Is modern medicine a luxury for the few? Is it a commodity available to only those who have the cash reserves to pay for it? How do we decide who gets this care? Do we deny children whose parents don’t have jobs with a hearty benefit package? Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off? Or do we leave people with mental illness without access? This is dangerously close to eugenics.

I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help. I want to point out that it’s the “pro-life” party endorsing all of this, and I’m calling bullcrap. There is nothing life-affirming or life-protecting about any of this. This is prioritizing finances over people and it’s repugnant.

If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In 11 years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent. I’m quite savvy at finding and accessing them, and we have attended a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredible for certain things, but only a drop in the bucket compared to the day-to-day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs.

So I ask you, do you really think it’s OK for people to suffer and die when medical care is available, but not affordable?

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Follow this journey at Ben’s Writing, Running Mom.  

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

947
947
10
JOIN THE CONVERSATION

How My Twins' T-Ball Team Learned About Inclusion

593
593
0

Like many 4-year-olds, my twin boys, Hunter and Troy, love baseball! But when it came time to sign them up for t-ball, I couldn’t help but be anxious.
Inclusion Evolution.
Typically, parents wouldn’t bat an eye at signing their twin boys up for the same t-ball team, but our situation is not so typical. Troy has Down syndrome, and I wasn’t sure how he would be received. Should I call and tell the coach that one of my boys has a cognitive disability? During the first practice, should I describe Troy’s low tone and how it may impact his ability to keep up? During the games, should I apologize for my son’s performance?

In the end, I didn’t say anything.

Troy on the ballfield.
Troy on the ballfield.

We play backyard baseball all the time. Troy is as good, if not better, than his typical twin brother at hitting, throwing, and catching the ball, which is to say they both suck as much as any 4-year-old who has never played. I hoped his team would accept him as any other first-time player.

We showed up to the first practice, and I could tell Troy was really nervous. Even though he’s as good as any other kid his age, he hates crowds. I hear about other kids with Down syndrome loving the spotlight. Troy is the opposite. If you laugh or cheer at his successes, he shuts down. I’m not sure if he thinks people are laughing at him, or if it’s too much sensory overload.

His seemingly lack of interest in the game was predictable, but still bummed me out. I wanted his team to see the enthusiastic ball player I watch in our backyard. I did mention to his coach that Troy has Down syndrome, and he may or may not decide to play. “That’s OK, right?” I asked with bated breath.

Coach Kyle, a laid-back father of two, said “This is my first time coaching. I think we’re all nervous. Let’s give him some time to get used to his team and the game.”

This is inclusion at its finest, and Coach Kyle seemed to come by it naturally. There was no hesitation to include Troy. Just an open-mind, and support if needed.

Troy at the base.
Troy at the base.

I wish I could say the team’s acceptance of Troy made his apprehension to play go away. It didn’t. He practiced with the team, he even played the field a few innings each game, but when it came time to hit the ball stage fright took over.

It took five games for Troy to finally hit the ball. But when he did, you could see the pride and pure happiness in his face! You could see the excitement in his teammates’ and their parents’ faces! They were genuinely excited to have Troy as part of the team, and more importantly see him succeed.

Troy at bat.
Troy at bat.

One particular player, 5-year-old Michael, always made a point to talk to Troy during the games he didn’t play. When Troy played his first full game, you could see the impact it had on Michael. He was so proud of his friend.

Although most of the kids on Troy’s team are too young to understand Troy’s difference, there’s still an important lesson to be learned by his presence. I know these sports encounters will become less as Troy gets older. We expect that Troy will play on typical sports teams, as well as in the Special Olympics. But these early encounters can change perceptions of individuals with Down syndrome, and open doors for Troy later. His teammates will one day be employers, teachers, or friends who will remember that Troy is more alike than different.

Follow Troy’s journey of inclusion at www.inclusionevolution.com.

We want to hear your story. Become a Mighty contributor here.

593
593
0
JOIN THE CONVERSATION

I'm Not Sorry My Sister Has Down Syndrome

2k
2k
1

“I’m sorry.”

I can vividly recall the exact moment I first heard those two little words in a brand new context.

They caught me completely off guard and left me confused. Those two little words momentarily stalled my train of thought and prevented me from uttering a coherent response.

From conversations I’ve had with many parents and siblings of individuals with disabilities, I realize I’m not alone in remembering this encounter in striking detail. It was a moment I’ll never forget.

In all previous situations, those two little words had demonstrated empathy, concern, and genuine care.

However, in this context, those two little words didn’t seem appropriate at all. Instead, “I’m sorry” suddenly became a phrase that made me realize how truly blessed I was.

Sitting with my steaming hot cup of coffee at a small local shop, I was waiting for a friend. At the table next to me, a younger, professionally dressed gentleman sat with his laptop out, busy working.

I can’t remember how we began chatting or exactly what questions were asked, but like I often do when talking with complete strangers, I remember sharing something about my younger sister, Sarah. It may have been a comment about how inviting and caring her demeanor is. Or it could’ve been a story about how she’s able to bring a smile to the face of anyone who encounters her.

Whatever I said, I know it had to do with how Sarah has completely changed the trajectory of my life, and my family members’ lives — for the better.

I forget what the gentleman asked me, exactly, but I began responding with, “Sarah has Down syndrome and –”

Immediately, the man’s eyes darted away from me and back to his laptop as he mumbled those two little words, “I’m sorry.”

Sometime after this chance encounter at the coffee shop, I remember reflecting on how that conversation made me feel.

I was never angry at the talkative and friendly stranger. He hadn’t intended to hurt my feelings or to pass judgement on me or my family. He was simply at a loss for words and did his best to say what he thought was appropriate given the situation. He was just unaware.

That day in the coffee shop, I was glad my friend was running a few minutes late because it gave me time to briefly share with this complete stranger how truly blessed I was by having Sarah in my life.

What did I enjoy most about this chance encounter? That I could offer a new and positive perspective to a total stranger.

Who knows who this gentleman has come into contact with since our conversation. Does he see individuals with disabilities any differently now? Maybe he chooses to extend a kind smile and a warm, “Hello there” to someone who he wouldn’t have in the past.

For me, this experience opened my eyes to the reality that not everyone shares my optimistic perspective on having a sibling with a disability. Sarah is truly a blessing in my life, personally, and she is the inspiration for what I do professionally. But other people have different perspectives, which makes it all the more important that I keep telling about Sarah and sharing how everyone has the ability to have an impact in the lives of others.

How are you raising awareness, promoting acceptance and changing perspectives?

We want to hear your story. Become a Mighty contributor here.

A version of this post appeared on Enable

2k
2k
1
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.