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Hello Humankindness

One woman's journey coping with unseen pain may change how the world sees disabilities.

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Dignity Health

When Annie Segarra goes about her daily life, it's not immediately obvious she's in pain 24/7.

Since she's so used to living with discomfort, she's able to walk around for a few minutes, but any longer than that, and she has to sit down and rest. However, the fact that she's not always in a wheelchair makes many passersby question wether or not she really has a disability and often results in judging looks and harsh words.

"They can't see that you're in pain because you look 'just fine,'" Segarra explains.

All photos via Annie Segarra, used with permission.

Segarra has Ehlers-Danlos syndrome (EDS), which is a rare connective tissue disorder that affects collagen in the body and causes joints to stretch farther than normal. While that may sound like some sort of superpower, it's anything but, and it's also just the tip of the iceberg in terms of the symptoms that people who have it experience.

Since collagen runs through the entire body, EDS acts as an umbrella for a seemingly endless list of disorders, including poor vision, chronic fatigue, and joint pain. It's also likely connected to postural orthostatic tachycardia syndrome (POTS), which causes a person's blood pressure to drop and heart rate to spike upon standing.

Segarra lives with all these symptoms and many others, but more often than not, they are invisible to the outside eye.

The discomfort and anxiety that accompanies this is enough of a strain, but when you tack on doctors and everyone else not believing you're in pain, everything's amplified.

"It feels like being at the bottom of a well shouting up and there's nobody there," Segarra says.

Annie with her cane dealing with a pain spike at the grocery store.

What's worse, a large part of why she went undiagnosed for so long wasbecause doctors continued to downplay and dismiss her symptoms and self-diagnoses.

Segarra actually started having symptoms as early as infancy, but she didn't realize they might be connected until she reached her early 20s.

She was working two jobs and taking care of her sister who has autism when she started experiencing severe pain in her feet while standing. One of her jobs at the time was as hostess at a restaurant, so she was confronted with that pain quite often, but she thought it might just be an intolerance to wearing heels.

When it got to the point where she could barely stand at all, she went to a see a podiatrist. He took an X-ray of her feet while she was standing, and it looked like she had flat feet. He assumed that was the root of her pain, so he prescribed orthotics. (Later Segarra would learn that people with EDS often appear to have flat feet because of how their hyperactive joints react to weight.)

After orthotics did nothing to help, the doctor suggested creating arches in her feet surgically. Not knowing what else to do, Segarra agreed.

The surgery left her in an unimaginable amount of distress and unable to walk for close to a year. But it also ultimately led to her diagnosis.

Annie in the hospital.

Segarra learned she was strangely immune to anesthesia — another EDS-related symptom. After six months in a wheelchair caused extreme back pain, she got an MRI that showed something unusual: She appeared to have dislocated joints all over her body.

By that time, she'd been documenting her journey with chronic pain via a video blog for about two years and was regularly communicating with other chronically ill and disabled people online. When she described her symptoms, EDS had kept coming up. However, every doctor she mentioned it to dismissed it until the moment she broke down in front of her spine specialist.

At that point, she had been managing escalating symptoms on her own for over a decade, and every time she tried to get answers from a doctor, they either had no advice or mocked her for self-diagnosing such a rare disorder. She was scared and exhausted and had finally had enough.

Thankfully, a doctor (who happened to be a woman) came in at that moment and really listened to what Segarra had to say. The doctor admitted to not knowing about EDS, but after looking it up on her phone, she turned to the primary specialist and said, "She could have this."

That was the tipping point. From there, Segarra was referred to a geneticist who recommended a chromosome blood test to find the genetic variant for EDS. Six months later, she had an official diagnosis.

After all that, Segarra still calls herself lucky because her diagnosis only took three years to get. Many people with similar "invisible" disorders aren't so fortunate.

The experience set her on a mission to change the misconceptions surrounding disabilities and educate others about the many ways one can be impaired.

Ever since middle school, Segarra's been an activist for one cause or another. As a queer Latinx woman, she always had a lot to fight for, but after experiencing years of blatant disregard for her disability, this fight reinvigorated the rest.

"Becoming disabled made me look at my activism real hard," Segarra says.

She uses her skills as a performer and storyteller to give a face and voice to her illness. On her YouTube channel, she confronts the prejudice people with less visible disabilities face on a daily basis.

Segarra has firsthand experience being called a faker simply because people don't realize that some disabilities don't require people to use an assisting device like a wheelchair all the time.

A note someone left on the car of a person with an invisible disability.

She also explores how having a disability affects things like body positivity and being in the LGBTQ community.

Unsurprisingly, Segarra's passion and strength is affecting a growing number of followers, but she knows there's still much more work to be done.

Right now, there's hardly any representation of people like her in media, which makes it easy for the world to remain ignorant about them. For example, Segarra had a heck of a time finding a character to be for Halloween because people with disabilities barely exist in pop culture.

But her activism is slowly but surely changing peoples' perceptions. She says she gets lots of comments like, "Thank you for saying this because I was one of those assholes who thought like this."

She's also helping people who are still searching for a diagnosis realize they're not alone on their journey.

Segarra hopes that one day, no one will be discounted for having a less visible disability. However, for that to happen, we have to learn to quell their snap judgements, and that starts with admitting we don't know what all disabilities look like.

Learn more about how to spot disabilities (spoiler alert, you can't) here:

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Now's your chance to help someone doing good in your community win $1000 towards the charity of their choice

Upworthy and P&G are back with the #ActsOfGood Awards.

Images provided by P&G

Three winners will be selected to receive $1000 donated to the charity of their choice.

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Doing good is its own reward, but sometimes recognizing these acts of kindness helps bring even more good into the world. That’s why we’re excited to partner with P&G again on the #ActsOfGood Awards.

The #ActsOfGood Awards recognize individuals who actively support their communities. It could be a rockstar volunteer, an amazing community leader, or someone who shows up for others in special ways.

Do you know someone in your community doing #ActsOfGood? Nominate them between April 24th-June 3rdhere.Three winners will receive $1,000 dedicated to the charity of their choice, plus their story will be highlighted on Upworthy’s social channels. And yes, it’s totally fine to nominate yourself!

We want to see the good work you’re doing and most of all, we want to help you make a difference.

While every good deed is meaningful, winners will be selected based on how well they reflect Upworthy and P&G’s commitment to do #ActsOfGood to help communities grow.

That means be on the lookout for individuals who:

Strengthen their community

Make a tangible and unique impact

Go above and beyond day-to-day work

The #ActsOfGood Awards are just one part of P&G’s larger mission to help communities around the world to grow. For generations, P&G has been a force for growth—making everyday products that people love and trust—while also being a force for good by giving back to the communities where we live, work, and serve consumers. This includes serving over 90,000 people affected by emergencies and disasters through the Tide Loads of Hope mobile laundry program and helping some of the millions of girls who miss school due to a lack of access to period products through the Always #EndPeriodPoverty initiative.

Visit upworthy.com/actsofgood and fill out the nomination form for a chance for you or someone you know to win. It takes less than ten minutes to help someone make an even bigger impact.

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Friendship

Little boy mistakes multimillionaire for homeless man and they end becoming good friends

The boy got to keep his dollar and gain a friend.

Screenshot WBRZ2|YouTube

Boy mistakes multimillionaire for homeless man forming friendship


Kids can be amazingly empathetic people, many of them doing what they can to help others in need unprompted. Homelessness has been an increasing issue across America and some kids have taken small steps to try to help when they can. Kids are seen doing things like volunteering at a soup kitchen with their family, handing out personal hygiene kits and even making sandwiches in their own kitchen to give out.

One kid has been noticing a growing homeless population and wanting to lend a helping hand, but every time he encountered someone without a home, he had no money. But Kelvin Ellis didn't stop the desire of wanting to help so the next time he came across a man that appeared homeless, he was excited that this time he had a dollar in his pocket.

Kelvin, who is 9-years-old spotted a houseless person standing in the corner of a restaurant and knew it was his chance. The boy approached the man who was standing with his eyes closed and held out the only money he had–a dollar bill. But to Kelvin's surprise, the man refused the kind gesture and instead bought him breakfast because it turned out the man wasn't homeless at all.

Matthew Busbice, the man standing in the corner, was simply doing his morning devotional prayer after having to leave his apartment in a rush when the building's fire alarm went off. The man stepped across the street to the coffee shop after it was confirmed to be a false alarm at his building. That's where Kelvin spotted him and attempted to give charity to Busbice, a multimillionaire.

Busbice launched and owns several brands and outdoor companies with his family. The multimillionaire also starred in two popular reality television shows with his family, Country Bucks on A&E and Wildgame Nation on Outdoor Channel. His money and niche fame didn't stop him from chatting with Kelvin over breakfast while the little boy's dad was at the eye doctor.

"You gave the only money in your pocket to me and thinking I was a homeless man, and that speaks volumes of your character and what this generation that's coming up. If their more like Kelvin and they're going to give, they're going to be filled with joy, they're going to be happy. They're going to change the community then change the parish and change the state, and they can change the world," Busbice tells WBRZ 2.

Kelvin didn't expect to make a friend that day, but he did. You can see how Busbice repaid the little boy's kind gesture below.

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Science

Bartender in Patagonia takes sustainability to a whole other level

Wait til you see how Federico Gil uses glaciers—yes, glaciers—to distill his signature gin.

Annie Reneau

Federico Gil puts his passion for sustainability into practice.

When people talk about sustainability in the food and drink industry, there's a lot of talk about plastic straws and reducing waste. But at Bar Pionero, the sustainability standard is set much, much higher. They do things I didn't even know were possible, and they don't do things a lot of people—those who put profit before protection of the environment—would do in the name of conservation.

And most of it comes down to the vision of elite bartender Federico Gil.

Gil and his brother founded Bar Pionero 14 years ago, after moving to Chilean Patagonia from Uruguay. The bar sits adjacent to the main lobby of the Las Torres Hotel, just inside Torres del Paine National Park, and with its wall of windows framing a towering mountain, just being in the bar is an experience. The food is good, and as someone who doesn't drink, I was delighted by the incredible mocktail offerings. But the highlight of the bar is Gil himself.

Watching Gil speak about sustainability was mesmerizing, even with him speaking in Spanish and me only understanding a few words of what he said. For the details, I needed the English-speaking translator, but Gil's passion for sustainability needed no translation; it was genuine and palpable.

bartender standing in front of a table full of drink-making materials.

Federico Gil shares how Bar Pionero creates its sustainable cocktails.

Annie Reneau

On a practical level, here are some of the zero-waste practices the bar has implemented:

- Not only do they not use plastic straws but they use signature copper straws. Chile is the world's largest copper producer, so the metal is plentiful. It's also naturally anti-bacterial (though they have a sanitation process they use to clean them, of course).

- They repurpose bottles and jars into drinking glasses and tools for the bartenders. Sometimes they even combine them with copper. Check out this gorgeous glass made from an upside down glass bottle top and copper.

Cocktail glass sitting on a table

Cocktail glass made from a glass bottle top and copper

Annie Reneau

- They make their own mixes, spirits, bitters, vinegars, etc. from the plants that grow naturally in the surrounding landscape as well as from the organic garden on site.

- They also make vinegar by capturing and repurposing the dribbles of beer that come out of the tap after a draft beer is poured.

- They brew their own beer using pure glacial water and hops grown in the garden. The byproduct of the brewing process then goes back into the garden as fertilizer.

glacier

Glacier in Torres del Paine National Park, part of the Southern Patagonia Ice Field

Annie Reneau

- They distill their own gin in small batches, using glacial water, 13 botanicals from the natural landscape and the clay left behind from the moving glaciers. Gil says his goal with the gin is to convey the "spirit of the ice." Glacial gin. Who knew?

The gin is so unique, Gil could certainly make money distributing it around the world, but he refuses. Same with the beer.

"The world doesn't need one more gin or one more beer," he says. The most sustainable way is not to sell it outside the hotel, where it would have to be shipped and transported. "We're not thinking about how much we can sell, but what impact we have," he adds.

It's literally putting their money where their mouth is, knowing they could have a lucrative product on their hands but not capitalizing on it because of the environmental impact that would have. And it's not just a guess—Gil says the bar actually keeps track and calculates their environmental impact using various measures.

bartender painting a rock held in tongs

Federico Gil painting a lemon extraction onto a frozen rock from Torres del Paine National Park

Annie Reneau

On top of all of that, watching Gil craft a cocktail is like watching an artist at work. He's as passionate about creativity as he is about sustainability, and it shows. I watched him light herbs on fire and set a glass bottle top over the flame to capture their essence, then paint a homemade cold extraction of lemon onto a frozen stone from the park, then shake together various liquids created from park botanicals and put it all together into glass made of layers of jar and glass tops.

I'd never seen anything like it, and I've rarely seen anyone who walks the sustainability talk so clearly in their work. It not only gave me hope for the conservation of Torres del Paine and Patagonia (which is stunning—a place bucket lists are made for, seriously), but also made me realize how much we have to learn from one another as we strive to protect our beautiful planet.

If you'd like to see Federico in action, check out this video from my experience there:

This writer was a guest of Las Torres Patagonia. This article was not reviewed by the hotel or anyone associated with it before publication.

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Pop Culture

Steve Martin has the best response to hearing that his book was banned in Florida

He thinks it's for the best.

via Joella Marano/Wikimedia Commons

Steve Martin's 2000 novella, "Shopgirl."

Over the past few years, book bans have been happening in public libraries and schools across America. In the 2022-2023 school year alone, over 3,300 books were banned in 182 school districts in 37 states.

Most books that have been banned deal with LGBTQ and racial themes. According to a report from PEN America, Florida has been the most aggressive state regarding book bans, accounting for about 40% of those taken off the shelves.

On November 5, Collier County, Florida, announced that it was banning 300 books from its school libraries out of an effort to comply with state law HB 1069, which says books that depict or describe “sexual content” can be challenged for removal.

Among the books banned by the school district was “Shopgirl,” a novella by author Steve Martin published in 2000. Martin is also the star of the hit Hulu show, “Only Murders in the Building,” featuring Martin Short and Selena Gomez.

Upon hearing about his book being banned, Martin responded with his iconic wit on Instagram, saying, “So proud to have my book Shopgirl banned in Collier County, Florida! Now, people who want to read it will have to buy a copy!"

“Shopgirl” is a story about a young woman who works in a luxury department store and has an affair with a wealthy older man. It was made into a movie in 2005 starring Claire Danes and Martin. It’s believed the book was banned for its mild sexual content. On Amazon, the book is recommended for readers ages 13 and up.


This article originally appeared on 11.11.23

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Family

Parents keep triplets' birth order a secret until a big reveal on their 18th birthday

Why did they wait so long?

via Allan Foster/Flickr

Representative image. Triplet babies in "Thing" outfits.

Many people believe that someone’s personality can be determined by their birth order within a family. Older siblings are often seen as more responsible and the youngest is frequently characterized as the most laid-back. Although there isn’t much research to back up these claims, there is evidence that birth order can affect someone’s intelligence.

So, does birth order have any effect on multiples? In a unique case like triplets, there can be a small, self-fulfilling prophecy effect. Parents and siblings may project stereotypes onto one another, such as, “You were born first, now you’re first at everything,” or “You were born last, no wonder you’re lazy.”

Triplets on TikTok are going viral because they were never able to have any squabbles about their birth order because they never knew it until they turned 18. Janie Hilbert, 18, shared a video in February featuring her triplet brothers, Luke and Wright, that showed their reaction to learning their birth order for the first time.

The video is touching, but it didn’t reveal the actual order, just their reaction and it was still viewed over 20 million times.

x3 🤷😆

@janie.banie4

x3 🤷😆

After the post, TikTok was shouting for a follow-up video that revealed the results. A few days later, Janie posted a video that revealed their birth order, set to the theme song from “Full House.”

triplet birth order reveal!!!

@janie.banie4

triplet birth order reveal!!!

The post showed that Wright is the oldest, followed by middle child Luke and then Janie. Janie was not excited about being the youngest. “I did not want to be the youngest,” Janie told Today.com. “That’s the one thing I really hoped I hadn’t been waiting 18 years to be the youngest and then here we are.”

The triplets’ parents, Stewart Hilbert and Clay Hilbert, told Today.com why they decided to wait until their 18th birthday to learn the truth about their birth order. The decision was made because Clayton, their oldest child, was born three years before the triplets.

“He was also definitely precocious, a rule follower and very literal,” Stewart said, adding that he would probably tried to enforce an “olest gets the bottle first” mentality when the triplets arrived. “We just didn’t want to play his game, and we were like, alright, let’s just keep it a secret. It’ll be fun. They won’t have to subscribe to any of the stereotypes of oldest, middle, youngest, all that.”

It was tough keeping the birth order a secret for all those years, especially with the children constantly begging to find out the answer. “They definitely wanted to know, and that made it even more fun,” Stewart explained.

“We tried to figure it out for so long. We begged and begged. They wouldn’t crack,” Janie added.

The funny thing was that their father secretly revealed the truth in the family group chat which featured the children’s names in birth order. But the triplets never put it together. "I was so excited to try to tell them that it was in front of them the whole time," Clay said.

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Internet

Women were asked if they'd rather be trapped in the woods with a bear or a man

Their answers left some men scratching their heads.

Representative photos by Aaron J. Hill and Greta Hoffman

Women choose being alone with bear instead of man in interview

There are often hypothetical scenarios that people get asked just to see what their answer will be. In most cases, the scenario is something that has a very slim chance of ever happening in real life, but it can be fun to allow your brain to wander. A hypothetical scenario is taking over social media right now and it has women nodding in agreement while many men are left scratching their heads.

Screenshot HQ took to the streets and asked random women if they would rather be stuck in the woods with a man or a bear. Overwhelmingly women chose to take their chances with a bear, some providing the inquirer with a reason as to why they'd chose a bear over a man. Unsurprisingly to most women, the participants saw the bear as the safer option.

Some men had a hard time understanding why women would risk being mauled by a bear, but several men did understand and took to social media to attempt to explain.

Some men seemingly easily knew why women would choose to be in the woods with a bear when their partners asked them the same question but the hypothetical woman was their daughter. In the video, one woman makes her case for choosing a bear.

"Well I've heard about bears, they don't always attack you right unless you f**k with them? So maybe a bear," she laughs.

Luis Torio responded to the video with an explanation for men who seemed confused by the amount of women choosing a bear. In his video he asks, "why would a woman choose a man over a bear when the number one predator of a woman is a man and not the bear?" He goes on to explain that if a woman is put in the woods with the wrong man, she could be in a much worse situation than with a bear.

@yourtango

Women were asked if they would rather be stuck in a forest with a man or a bear - and their answers are sad #manvsbear

YourTango jumped in on the debate and dropped a few facts with the most staggering being, "the 750,000 black bears in North America unalive less than one person per year on average. Men aged 18-24 are 167 times more likely to unalive someone." The woman in the video also cites assault statistics for women.

That's not to say that all men would be dangerous if trapped in the woods with them, commenters and content creators point that out. The concern seems to be more about the predictability of bears verses the predictability of an unknown man.

You can watch the original video that started this weeks long debate below:

@screenshothq

The question of being stuck in a forest with a man or a bear is circulating on TikTok right now and sparking some interesting conversation.... we know what our answer would be 🐻🌳 #manvsbear #tiktok #tiktoktrend #trending #challenge #streetinterview #voxpop

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