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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.

Joy

Nurse turns inappropriate things men say in the delivery room into ‘inspirational’ art

"Can you move to the birthing ball so I can sleep in the bed?"

Holly the delivery nurse.

After working six years as a labor and delivery nurse Holly, 30, has heard a lot of inappropriate remarks made by men while their partners are in labor. “Sometimes the moms think it’s funny—and if they think it’s funny, then I’ll laugh with them,” Holly told TODAY Parents. “But if they get upset, I’ll try to be the buffer. I’ll change the subject.”

Some of the comments are so wrong that she did something creative with them by turning them into “inspirational” quotes and setting them to “A Thousand Miles” by Vanessa Carlton on TikTok.

“Some partners are hard to live up to!” she jokingly captioned the video.

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All images provided by Adewole Adamson

It begins with more inclusive conversations at a patient level

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Adewole Adamson, MD, of the University of Texas, Austin, aims to create more equity in health care by gathering data from more diverse populations by using artificial intelligence (AI), a type of machine learning. Dr. Adamson’s work is funded by the American Cancer Society (ACS), an organization committed to advancing health equity through research priorities, programs and services for groups who have been marginalized.

Melanoma became a particular focus for Dr. Adamson after meeting Avery Smith, who lost his wife—a Black woman—to the deadly disease.

melanoma,  melanoma for dark skin Avery Smith (left) and Adamson (sidenote)

This personal encounter, coupled with multiple conversations with Black dermatology patients, drove Dr. Adamson to a concerning discovery: as advanced as AI is at detecting possible skin cancers, it is heavily biased.

To understand this bias, it helps to first know how AI works in the early detection of skin cancer, which Dr. Adamson explains in his paper for the New England Journal of Medicine (paywall). The process uses computers that rely on sets of accumulated data to learn what healthy or unhealthy skin looks like and then create an algorithm to predict diagnoses based on those data sets.

This process, known as supervised learning, could lead to huge benefits in preventive care.

After all, early detection is key to better outcomes. The problem is that the data sets don’t include enough information about darker skin tones. As Adamson put it, “everything is viewed through a ‘white lens.’”

“If you don’t teach the algorithm with a diverse set of images, then that algorithm won’t work out in the public that is diverse,” writes Adamson in a study he co-wrote with Smith (according to a story in The Atlantic). “So there’s risk, then, for people with skin of color to fall through the cracks.”

Tragically, Smith’s wife was diagnosed with melanoma too late and paid the ultimate price for it. And she was not an anomaly—though the disease is more common for White patients, Black cancer patients are far more likely to be diagnosed at later stages, causing a notable disparity in survival rates between non-Hispanics whites (90%) and non-Hispanic blacks (66%).

As a computer scientist, Smith suspected this racial bias and reached out to Adamson, hoping a Black dermatologist would have more diverse data sets. Though Adamson didn’t have what Smith was initially looking for, this realization ignited a personal mission to investigate and reduce disparities.

Now, Adamson uses the knowledge gained through his years of research to help advance the fight for health equity. To him, that means not only gaining a wider array of data sets, but also having more conversations with patients to understand how socioeconomic status impacts the level and efficiency of care.

“At the end of the day, what matters most is how we help patients at the patient level,” Adamson told Upworthy. “And how can you do that without knowing exactly what barriers they face?”

american cancer society, skin cacner treatment"What matters most is how we help patients at the patient level."https://www.kellydavidsonstudio.com/

The American Cancer Society believes everyone deserves a fair and just opportunity to prevent, find, treat, and survive cancer—regardless of how much money they make, the color of their skin, their sexual orientation, gender identity, their disability status, or where they live. Inclusive tools and resources on the Health Equity section of their website can be found here. For more information about skin cancer, visit cancer.org/skincancer.

The mesmerizing lost art of darning knit fabric.

For most of human history, people had to make their own clothing by hand, and sewing skills were subsequently passed down from generation to generation. Because clothing was so time-consuming and labor-intensive to make, people also had to know how to repair clothing items that got torn or damaged in some way.

The invention of sewing and knitting machines changed the way we acquire clothing, and the skills people used to possess have largely gone by the wayside. If we get a hole in a sock nowadays, we toss it and replace it. Most of us have no idea how to darn a sock or fix a hole in any knit fabric. It's far easier for us to replace than to repair.

But there are still some among us who do have the skills to repair clothing in a way that makes it look like the rip, tear or hole never happened, and to watch them do it is mesmerizing.

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Pop Culture

Artist uses AI to create ultra realistic portraits of celebrities who left us too soon

What would certain icons look like if nothing had happened to them?

Mercury would be 76 today.

Some icons have truly left this world too early. It’s a tragedy when anyone doesn’t make it to see old age, but when it happens to a well-known public figure, it’s like a bit of their art and legacy dies with them. What might Freddie Mercury have created if he were granted the gift of long life? Bruce Lee? Princess Diana?

Their futures might be mere musings of our imagination, but thanks to a lot of creativity (and a little tech) we can now get a glimpse into what these celebrities might have looked like when they were older.

Alper Yesiltas, an Istanbul-based lawyer and photographer, created a photography series titled “As If Nothing Happened,” which features eerily realistic portraits of long gone celebrities in their golden years. To make the images as real looking as possible, Yesiltas incorporated various photo editing programs such as Adobe Lightroom and VSCO, as well as the AI photo-enhancing software Remini.

“The hardest part of the creative process for me is making the image feel ‘real’ to me,” Yesiltas wrote about his passion project. “The moment I like the most is when I think the image in front of me looks as if it was taken by a photographer.”

Yesiltas’ meticulousness paid off, because the results are uncanny.

Along with each photo, Yesiltas writes a bittersweet message “wishing” how things might have gone differently … as if nothing happened.
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