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Jimmy has built a wonderful life, but his diagnosis presented some unexpected challenges.

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Muscular Dystrophy Association

Growing up, Jimmy Valdes' parents raised him to focus on all the things he could do, not the things he couldn’t.

Jimmy was diagnosed with spinal muscular atrophy (SMA) in 1971 when he was only 4 years old. SMA is a degenerative spinal disease that causes weakness of the voluntary muscles — often those in the shoulders, thighs, hips, and back. People who have it usually need assistance to complete physical tasks.


Check out Jimmy's story here, or read more below:

As Cuban immigrants, Jimmy's parents were driven and determined to give their family the most normal life possible. They took him on family vacations. He played catch with his dad. He went to school and went on dates and read comic books.

His parents made it clear to him that he would always need help but that nothing was impossible. And he believed them. Jimmy told Upworthy, "If not for the decisions they made back then, my life wouldn't have turned out the way it did. And it's still a work in progress, it's every day, every week, every month."

Jimmy can't do everything, though, and needs caretakers to assist him through his daily routine.

He needs help completing all physical activities, from hygiene to meal prep to transportation. This is a reality that he's dealt with for most of his life, and he hasn't let it limit him.

There are systems and programs in place to help people like Jimmy who live with disabilities. Unfortunately, those supports sometimes fall short. Jimmy’s reality is proof of that.

All images via Muscular Dystrophy Association/YouTube.

You see, in spite of Jimmy’s severe disability, he does not qualify for disability benefits.

He's the breadwinner in his family — he has worked for CBS for over 20 years — and because he earns an income that exceeds the amount allowed, Jimmy does not qualify for disability benefits through the Social Security Administration that would help him pay for the care and services necessary to live his everyday life.

Almost all of his care he pays for out-of-pocket.

And the costs are astronomical. He said he spends hundreds per week on caretakers. He even quipped that he's been audited by the IRS a number of times because they couldn't believe that a single man had such exorbitant expenses.

As he put it, "it costs more for me to live life."

The Social Security Administration makes it clear that it's possible to work and receive benefits, so long as your earnings aren't "substantial." What does that mean? For 2016, the SSA site says that per month, "we consider earnings over $1,130 ($1,820 if you're blind) to be substantial."

So, you can be making a barely livable wage, especially in a city as notoriously expensive as New York City and not qualify. If you make more than the figures mentioned above, your care isn't covered.

This is Jimmy's dilemma, and he’s not the only one.

The Muscular Dystrophy Association shared a post on Facebook asking for comments and insight regarding efforts to work while dealing with a muscle-debilitating disease. The responses are telling.

One person mentions that, like Jimmy, he doesn’t meet the stringent income requirements to receive benefits, but that "as long as I can work that is a far more fulfilling life then having to watch every cent to be sure I'm poor enough." Another person mentions that she is "afraid to get any kind of raise or promotion due to income caps."

These are men and women who want nothing more than to live life on their terms but who are, in effect, limited by a policy that is meant to serve them.

The very system that was built to support them has let them down.

As hard as it may be to pay for his care and continue supporting his family, Jimmy isn't letting it prevent him from living the life he dreamed of.

He continues to work because he genuinely likes what he does. He's built a career and has a network of people who support him. He met and married the love of his life and is devoted to her and her family, all of whom remain a source of endless inspiration for him. He goes to concerts and games and makes every effort to enjoy the life he's worked so hard to build.

In addition to working hard toward his own self-sufficiency, Jimmy is focused on helping others in a similar situation have the opportunity to live life on their terms.

He wants to use his voice to bring awareness to the issues that people who have disabilities face and to help find solutions. He wants everyone to have the opportunity to live life their way, much as he has. And he wants the systems that are built to support people like himself to not be the very thing that limits them.

He's not yet sure where to start, but he's determined.


People with disabilities can and do live meaningful and contributing lives, and we can work together to help ensure that the systems intended to lift up individuals with disabilities do not hold them back.

MDA is proud to be part of the collective effort to break down barriers to meaningful employment for those living with disabilities, including looking at ways to help individuals work while keeping benefits like personal care in place. Get involved today by joining MDA’s advocacy efforts, contributing to help individuals like Jimmy live unlimited, or sharing your story about how you balance employment and personal care needs by emailing advocacy@mdausa.org.

Image from Pixabay.

Under the sea...

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The Wilderness Society


You're probably familiar with the literary classic "Moby-Dick."

But in case you're not, here's the gist: Moby Dick is the name of a huge albino sperm whale.

(Get your mind outta the gutter.)


There's this dude named Captain Ahab who really really hates the whale, and he goes absolutely bonkers in his quest to hunt and kill it, and then everything is awful and we all die unsatisfied with our shared sad existence and — oops, spoilers!


OK, technically, the narrator Ishmael survives. So it's actually a happy ending (kind of)!

whales, Moby Dick, poaching endangered species

Illustration from an early edition of Moby-Dick

Image from Wikimedia Commons.

Basically, it's a famous book about revenge and obsession that was published back in 1851, and it's really, really long.

It's chock-full of beautiful passages and dense symbolism and deep thematic resonance and all those good things that earned it a top spot in the musty canon of important literature.

There's also a lot of mundane descriptions about the whaling trade as well (like, a lot). That's because it came out back when commercial whaling was still a thing we did.

conservation, ocean water conservation

A non-albino mother and baby sperm whale.

Photo by Gabriel Barathieu/Wikipedia.

In fact, humans used to hunt more than 50,000 whales each year to use for oil, meat, baleen, and oil. (Yes, I wrote oil twice.) Then, in 1946, the International Whaling Commission stepped in and said "Hey, wait a minute, guys. There's only a few handful of these majestic creatures left in the entire world, so maybe we should try to not kill them anymore?"

And even then, commercial whaling was still legal in some parts of the world until as recently as 1986.

International Whaling Commission, harpoons

Tail in the water.

Whale's tail pale ale GIF via GoPro/YouTube

And yet by some miracle, there are whales who were born before "Moby-Dick" was published that are still alive today.

What are the odds of that? Honestly it's hard to calculate since we can't exactly swim up to a bowhead and say, "Hey, how old are you?" and expect a response. (Also that's a rude question — jeez.)

Thanks to some thoughtful collaboration between researchers and traditional Inupiat whalers (who are still allowed to hunt for survival), scientists have used amino acids in the eyes of whales and harpoon fragments lodged in their carcasses to determine the age of these enormous animals — and they found at least three bowhead whales who were living prior to 1850.

Granted those are bowheads, not sperm whales like the fictional Moby Dick, (and none of them are albino, I think), but still. Pretty amazing, huh?

whale blubber, blue whales, extinction

This bowhead is presumably in adolescence, given its apparent underwater moping.

GIF via National Geographic.

This is a particularly remarkable feat considering that the entire species was dwindling near extinction.

Barring these few centenarian leviathans, most of the whales still kickin' it today are between 20 and 70 years old. That's because most whale populations were reduced to 10% or less of their numbers between the 18th and 20th centuries, thanks to a few over-eager hunters (and by a few, I mean all of them).

Today, sperm whales are considered one of the most populous species of massive marine mammals; bowheads, on the other hand, are still in trouble, despite a 20% increase in population since the mid-1980s. Makes those few elderly bowheads that much more impressive, huh?

population, Arctic, Great Australian Blight

Southern Right Whales hangin' with a paddleboarder in the Great Australian Bight.

GIF via Jaimen Hudson.

Unfortunately, just as things are looking up, these wonderful whales are in trouble once again.

We might not need to worry our real-life Captain Ahabs anymore, but our big aquatic buddies are still being threatened by industrialization — namely, from oil drilling in the Arctic and the Great Australian Bight.

In the off-chance that companies like Shell and BP manage not to spill millions of gallons of harmful crude oil into the water, the act of drilling alone is likely to maim or kill millions of animals, and the supposedly-safer sonic blasting will blow out their eardrums or worse.

This influx of industrialization also affects their migratory patterns — threatening not only the humans who depend on them, but also the entire marine ecosystem.

And I mean, c'mon — who would want to hurt this adorable face?

social responsibility, nature, extinction

BOOP.

Image from Pixabay.

Whales might be large and long-living. But they still need our help to survive.

If you want another whale to make it to his two-hundred-and-eleventy-first birthday (which you should because I hear they throw great parties), then sign this petition to protect the waters from Big Oil and other industrial threats.

I guarantee Moby Dick will appreciate it.


This article originally appeared on 11.04.15

National Autistic Society/Youtube

"Diverted" educational video shared through the Too Much Information Campaign.

Everyone who lives with autism experiences it somewhat differently. You'll often hear physicians and advocates refer to the spectrum that exists for those who are autistic, pointing to a wide range of symptoms and skills.

But one thing many autistic people experience is sensory processing issues.


For autistic people, processing the world around them when it comes to sight, smell, or touch can be challenging, as their senses are often over- or under-sensitive. Certain situations — like meandering through a congested mall or enduring the nonstop blasting of police sirens — can quickly become unbearable.

This reality is brought to life in a new video by the U.K.'s National Autistic Society (NAS).

The eye-opening PSA takes viewers into the mind of a autistic woman as she thinks about struggling to stay composed in a crowded, noisy train.

It's worth a watch:

The PSA hit especially close to home for 22-year-old actress and star of the video Saskia Lupin, who is autistic herself. "Overall I feel confused," she said, of abrupt changes to her routine. "Like I can't do anything and all sense of rationality is lost."

She's not alone.

According to a study cited in NAS' press release, 75% of autistic people say unexpected changes make them feel socially isolated. What's more, 67% reported seeing or hearing negative reactions from the public when they try to calm themselves down in such situations — from eyerolls and stares to unwelcome, hurtful comments.

The new PSA aims to improve that last figure in particular.

It's part of the organization's Too Much Information campaign — an initiative to build empathy and understanding in allistic (i.e., not autistic) people for those on the spectrum.

Autism Awareness Day, campaign, World Autism Awareness Week

Campaign by National Autistic Society created to share the autistic experience to the world.

Photo from Pixabay

"It isn't that the public sets out to be judgmental towards autistic people," Mark Lever, chief executive of the NAS, said in a statement in 2016. It's just that, often, the public doesn't "see" the autism.

"They see a 'strange' man pacing back and forth in a shopping center," Lever explained, "or a 'naughty' girl having a tantrum on a bus, and don't know how to respond."

Well, now we do.

Instead of staring, rolling your eyes, or thinking judgmental thoughts about the young person's parents, remember: You have no idea what that stranger on the train is going through.

“We can't make the trains run on time," said Lever. But even the simplest, smallest things — like remembering not to stare and giving a person some space and compassion if they need it — can make a big difference.


This article originally appeared on 03.28.18

Joy

Pet cockatiel is obsessed with singing 'September' by Earth, Wind and Fire

Kiki remembers the 21st night of September ALL. THE. TIME. and it's actually quite impressive.

Representative hoto by Saqib Iqbal Digital on Unsplash

Apparently, "September" is all the rage with cockatiels.

“Do you remember…the 21st night of September?” has been one of the most iconic song openings of the past 45 years, as the R&B hit by Earth, Wind and Fire perpetually serves as a catchy favorite for dance clubs, movie scenes and TikTok clips alike.

However, "September" has also gained wild popularity among an unlikely group—pet cockatiels.


One cockatiel in particular has taken a shining to the song to the point of obsession, to the combined delight and chagrin of his owner. You see, Kiki doesn’t just like listening to the song, he sings and dances to it. Loudly. Over and over. At uncomfortable hours of the morning.

Kiki’s owner has shared multiple examples of her pet bird reveling in his favorite song, and it’s hilarious every time.

Watch:

@kiki.tiel

Send help plz wheres the off button on parrot #fyp #foryou #bird #cockatiel #parrotsoftiktok #birdsoftiktok

"Kiki…it's 7 o'clock in the morning…" Yeah, Kiki does not care. Kiki is feelin' the groove.

This isn't just a one-off and it's also not just a random song. Here we can see that Kiki recognizes it and sings it when his owner plays it. (Just after pooing on her leg—the reality of having a bird, in case these videos make you want one).

@kiki.tiel

Babywipes handy at all hours 🫡 #bird #cockatiel #fyp #foryou #september #parrot

But Kiki doesn't even need anyone else around in order to sing his favorite song. Here he is singing and dancing all by himself when his owner left the room and left her camera running to see what he would do.

@kiki.tiel

Partying without me :( #cockatielsoftiktok #birds #fyp #for you

As cute and hilarious as this is, it surely gets old after a while, right? It's one thing to watch in a video—it's got to be entirely another to hear it all the time at home.

It's also not just a Kiki quirk. Apparently, "September" is a "thing" among cockatiels. Other cockatiels have been known to love it and sing it, though not quite as well as Kiki does.

Someone on Reddit asked why so many cockatiels love the song—one person even said it was basically the cockatiel national anthem at this point. No one knows exactly why, but this explanation by Reddit user nattiecakes is as good an explanation as any:

"Yeah, cockatiels genuinely like the song in a way they don’t universally take to many other songs. My cockatiel is 17 and early in life basically seemed to max out his harddrive space learning a little bit of La Cucaracha, The Flintstones theme, the phrase 'pretty bird,' and this horrible alarm clock sound that is similar to the hungry baby cockatiel sound. We thought we could not get him to learn anything else because they do have some limits.

Then 'September' came. Every cockatiel loved it. We decided to see if our cockatiel loved it.

I sh*t y’all not, within a DAY he whistled the first three notes, which is really all that matters. He hasn’t been able to learn more, but he loves it.

Now our African grey whistles it to him constantly. He used to reliably whistle La Cucaracha to our cockatiel when our cockatiel would get angry and upset, and our cockatiel would start singing instead and forget he’d been upset. But almost immediately our grey switched to using 'September' 90% of the time. Like, it’s so plain even to our grey that 'September' is the song to unlock a cockatiel’s better nature. I think the grey likes it a lot too, but he has many other songs he likes better.

As for why cockatiels like this song so much… all I can guess is it really resonates with their cheery vibe. I think the inside of a cockatiel’s mind is usually like a disco."

Rock on, Kiki. Just maybe not so early in the morning.

How to clear a stuffy nose instantly.

With cold season upon us, there's no better time to learn a couple of awesome and easy tricks that will clear up the dreaded and annoying stuffy nose.

Prevention magazine created a short video showing two easy ways to get you breathing free again no matter how stuffed up you might be.


Both tricks take less than two minutes and are certainly worth trying out when it feels like that runny nose might never go away.


Watch the YouTube video below:

This article first appeared on 9.8.17.

Pop Culture

A brave fan asks Patrick Stewart a question he doesn't usually get and is given a beautiful answer

Patrick Stewart often talks about his childhood and the torment his father put him and his mother through.

Patrick Stewart often talks about his childhood and the torment his father put him and his mother through. However, how he answered this vulnerable and brave fan's question is one of the most eloquent, passionate responses about domestic violence I've ever seen.



WARNING: At 2:40, he's going to break your heart a little.

You can read more about Heather Skye's hug with Captain Picard at her blog.


This article originally appeared on 06.26.13.