+
upworthy
More

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

True
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.

All images provided by Prudential Emerging Visionaries

Collins after being selected by Prudential Emerging Visionaries

True

A changemaker is anyone who takes creative action to solve an ongoing problem—be it in one’s own community or throughout the world.

And when it comes to creating positive change, enthusiasm and a fresh perspective can hold just as much power as years of experience. That’s why, every year, Prudential Emerging Visionaries celebrates young people for their innovative solutions to financial and societal challenges in their communities.

This national program awards 25 young leaders (ages 14-18) up to $15,000 to devote to their passion projects. Additionally, winners receive a trip to Prudential’s headquarters in Newark, New Jersey, where they receive coaching, skills development, and networking opportunities with mentors to help take their innovative solutions to the next level.

For 18-year-old Sydnie Collins, one of the 2023 winners, this meant being able to take her podcast, “Perfect Timing,” to the next level.

Since 2020, the Maryland-based teen has provided a safe platform that promotes youth positivity by giving young people the space to celebrate their achievements and combat mental health stigmas. The idea came during the height of Covid-19, when Collins recalled social media “becoming a dark space flooded with news,” which greatly affected her own anxiety and depression.

Knowing that she couldn’t be the only one feeling this way, “Perfect Timing” seemed like a valuable way to give back to her community. Over the course of 109 episodes, Collins has interviewed a wide range of guests—from other young influencers to celebrities, from innovators to nonprofit leaders—all to remind Gen Z that “their dreams are tangible.”

That mission statement has since evolved beyond creating inspiring content and has expanded to hosting events and speaking publicly at summits and workshops. One of Collins’ favorite moments so far has been raising $7,000 to take 200 underserved girls to see “The Little Mermaid” on its opening weekend, to “let them know they are enough” and that there’s an “older sister” in their corner.

Of course, as with most new projects, funding for “Perfect Timing” has come entirely out of Collins’ pocket. Thankfully, the funding she earned from being selected as a Prudential Emerging Visionary is going toward upgraded recording equipment, the support of expert producers, and skill-building classes to help her become a better host and public speaker. She’ll even be able to lease an office space that allows for a live audience.

Plus, after meeting with the 24 other Prudential Emerging Visionaries and her Prudential employee coach, who is helping her develop specific action steps to connect with her target audience, Collins has more confidence in a “grander path” for her work.

“I learned that my network could extend to multiple spaces beyond my realm of podcasting and journalism when industry leaders are willing to share their expertise, time, and financial support,” she told Upworthy. “It only takes one person to change, and two people to expand that change.”

Prudential Emerging Visionaries is currently seeking applicants for 2024. Winners may receive up to $15,000 in awards and an all-expenses-paid trip to Prudential’s headquarters with a parent or guardian, as well as ongoing coaching and skills development to grow their projects.

If you or someone you know between the ages of 14 -18 not only displays a bold vision for the future but is taking action to bring that vision to life, click here to learn more. Applications are due by Nov. 2, 2023.
Health

Artists got fed up with these 'anti-homeless spikes.' So they made them a bit more ... comfy.

"Our moral compass is skewed if we think things like this are acceptable."

Photo courtesy of CC BY-ND, Immo Klink and Marco Godoy

Spikes line the concrete to prevent sleeping.


These are called "anti-homeless spikes." They're about as friendly as they sound.

As you may have guessed, they're intended to deter people who are homeless from sitting or sleeping on that concrete step. And yeah, they're pretty awful.

The spikes are a prime example of how cities design spaces to keep homeless people away.

Keep ReadingShow less
via YouTube/ClubRandom

Bill Maher and Julian Lennon discuss The Beatles on the "Club Random" podcast.

Julian Lennon, son of Beatle John Lennon and his first wife, Cynthia, had a candid, two-hour conversation with Bill Maher on a recent episode of his “Club Random” podcast. During their intimate talk, Julian discussed his complicated feelings about being the subject of one of The Beatles' most famous songs, “Hey Jude.”

“Hey Jude” was written by Paul McCartney while driving to the Lennons’ house to comfort them after John Lennon left Cynthia for Yoko Ono in 1968. The song is credited to the Lennon-McCartney songwriting partnership, which by ‘68 mainly had splintered.

Keep ReadingShow less
Education

Mother of 7 stunned to learn the ‘Alphabet Song’ has been changed to get with the times

There's a good reason for the update. But it's jarring, to say the least.

Jessica Skube can't believe that they changed the 'Alphabet Song.'

The oldest published version of the melody to the “Alphabet Song” was in 1761. However, because it’s the same melody as “Twinkle Twinkle Little Star” and “Baa Baa Black Sheep,” it's hard to trace it to its original composer.

The “Alphabet Song” is so deeply entrenched in American culture that it almost seems sacrilegious to change a piece of music that’s one of the first most of us ever learned. But after all these years, some educators are altering the classic melody so that there is a variation when the letters L-M-N-O-P are sung.

This change shocked popular TikTokker Jessica Skube, who documents life raising 7 children with her 2.6 million followers. Nearly 10 million people have watched her video revealing the significant change, and it’s received over 56,000 comments since first being published in late 2020.

Keep ReadingShow less

Gen Zer asks what older generations did before Google

Google and smart phones have been around so long that Gen Z doesn't know a time before those things existed. They may have Googled what a card catalog was used for but plenty of them don't know the pressure we all felt having to learn the dewy decimal system while walking around the library with a card with numbers scribbled on it.

They've never experienced the frustration of having an out of date Encyclopedia collection from the thrift store that was missing books "D" and "X-Z" when you had a research assignment due. Oh, sweet tech savvy - we not me generation, doesn't understand that riding shot gun on a road trip meant you were suddenly a pirate with an Atlas map bigger than the dashboard.

Even as someone that was alive when having a rotary phone was the norm, I sometimes forget what life was like before all of the technological luxuries. It's not surprising that Gen Z is confused on how we survived back then without knowledge at our fingertips, so when one of them asked, Gen X, Xennials and elder Millennials entered the chat.

Keep ReadingShow less
Joy

Doting husband serves as stylist for his wife of 25 years and it's the sweetest thing

The way he talks about "Flower"—his nickname for his wife—is a testament to lasting love.

Talk about an adorable couple

If there's one thing pretty much all humans love, it's love—love that works, love that lasts, love that inspires. Literature is full of love stories filled with heartache and heartbreak, but we always hold out hope that a relationship will not only endure but blossom.

Such a love feels rare enough that we marvel when we see it, which is why the Motivat family has gained a loyal following on Instagram. The elder Motivats (Dr. Jones and Dr. Beatrice) have been married for 25 years, and their daughter shares their sweet interactions on the Instagram account @queenmotivat.

One of the hallmarks of the couple's long-time love story is that Dr. Jones loves to pick out clothes for his wife. And not just any clothes—beautiful dresses and gowns, along with jewelry to go with them—and his enthusiasm for seeing "Flower" (his nickname for her) dressed up is incredibly sweet.

Keep ReadingShow less

Know the signs of a domestic abuser.

Most abusers don't start their relationships by hitting their partners. That's why early warning signs are vital to recognize.

I know two women who recently left abusive partners. Both men seemed sweet and likable—even gentle—each time I saw them. Both had some lovely qualities as people and even as partners. And both turned out to be controlling, increasingly abusive partners behind closed doors.


Keep ReadingShow less