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They thought their son lived an isolated life. But when he died, friends showed up in droves.

Mats Steen's parents were shocked to learn their severely disabled son had lived a rich, independent life they knew nothing about.

Mats Steen lived a secret life that his family only discovered after he died.

Mats Steen was only 25 years old when he passed away, his body succumbing to the genetic disease that had slowly taken his mobility since childhood. He'd lived in a wheelchair since his early teens, and by his 20s, his physical abilities had deteriorated to the point of only being able to move his fingers. He could push buttons and use a mouse, and he spent nearly all of his waking hours playing video games in his parents' basement.

His family loved him and cared for him through it all, giving him as much of a normal life as they could. But they also lamented everything they knew he'd missed out on. "Our deepest sorrow lay in the fact that he would never experience friendships, love, or to make a difference in people's lives," Mats' father shares.

Mats left behind the password to a blog he kept. Not knowing if anyone would actually read it, his parents published the news of Mats' passing in a blog post, adding their email address in case anyone wanted to reach out.

Much to their surprise, messages began pouring in from around the world—not just with condolences, but with heartfelt stories from people who called Mats their friend.

The Steens soon discovered that their son had lived a much fuller life than they'd ever imagined—one that included all the things they always wished for him.

As his online life was revealed, the family learned that Mats began his days with a routine 30-minute sprint through the forest. He frequented cafes and pubs, chatting with strangers and flirting with women. He sat by campfires having heart-to-heart conversations. He made friends and enemies. He fought heroic battles. He supported people in times of need. He gave advice that people took. He experienced his first kiss.

And he did it all as "Ibelin," his handsome, muscular avatar in the online game World of Warcraft.

- YouTubeyoutu.be

Mats' life is showcased in the documentary The Remarkable Life of Ibelin, in which his parents share the story of how they discovered their son's group of friends they didn't know he had.

People who've never played an open world roleplay game like World of Warcraft may wonder how real community can be built through it, but Mats' story proves it's possible. The friends he made through the game have shared the real influence he'd had on their real lives, from helping them with problems they were facing to empowering them to make positive changes in their relationships.

Though he never met them face-to-face, Mats' online friends say he made a significant impact on them.

A young woman Ibelin had connected with as a teenager—the one with whom he'd shared that first virtual kiss—shared that her parents had taken away her computer when they feared gaming was interfering with her studies. When she logged on at a local library, Mats gave her a letter he had written to give to her parents, encouraging them to talk with her about her gaming hobby and to work out a solution together that didn't require her to give it up completely. She printed it and gave it to them. Miraculously, it worked.

Another woman had been having a hard time connecting with her autistic son as a young adult. When she talked with Ibelin about her struggles, he suggested that she and her son start gaming together and connect in that way first. Eventually, that connection via the virtual world led to warmer in-person interactions between them—and a life-changing shift in their relationship.

"I don't think he was aware of the impact that he had done to a lot of people," the mother shared.

Mats interacted with the same online friends as Ibelin for years, going through the kinds of ups and downs all friendships experience. He kept his physical condition a secret until close to the end of his life, when he finally opened up to another player who convinced him to share his reality with the others. Some traveled from other countries to attend his funeral, with one of them speaking on the group's behalf and a few of them serving as pallbearers. Those who knew Ibelin also held a memorial in-game at his virtual gravesite—a tradition that has spread beyond just his own guild.

Typically, we think of someone escaping the real world and spending hours a day playing video games as unhealthy, but for Mats, it was a lifeline. As Ibelin, Mats was able to have a level of independence and a rich social life that simply wasn't possible for him in the offline world—an uniquely modern phenomenon that technology and human creativity have made possible.

Mats' impact on his online community was real, and 10 years after his passing his impact is spreading even further.

Duchenne muscular dystrophy (DMD), the genetic disease that Mats lived with and ultimately died from, affects 300,000 boys worldwide. It only affects males and it has no cure. But CureDuchenne, a global nonprofit dedicated to funding and finding a cure, partnered with video game company Blizzard Entertainment's World of Warcraft in Mats' honor from the end of 2024 until January 7, 2025. During that window, World of Warcraft players could purchase a limited-edition pet fox named Reven ("fox" in Norwegian). The Reven Pack, which includes a transmog backpack and Reven’s Comfy Carrier, costs $20, with 100% of the purchase price being donated to CureDuchenne.

The Reven Pack on World of Warcraft—100% of purchase cost goes to the CureDuchenne foundation.World of Warcraft/CureDuchenne

“Mats Steen lived a life in World of Warcraft that he couldn’t in the real world as he fought Duchenne muscular dystrophy alongside his incredible family, who I’m proud to have met and fallen in love with,” said Holly Longdale, executive producer of World of Warcraft. “Working with CureDuchenne for our Charity Pet Program, in honor of Mats’ memory, allows us to harness the power of our phenomenal global community to bring meaningful impact to so many lives.”

In February 2025, CureDuchenne announced that The Reven Pack raised over two million dollars in support. Later in the month, Debra and Hawken Miller of Cure Duchenne spoke with ViceVice and shared how The Reven Pack helped raise valuable awareness about Duchenne in addition to funds. For those interested in updates, the site keeps donors and supporters current on all developments in Duchenne research news.

Mats life was truly impactful in many ways and to many people. His love, kindness, and friendship touched lives and his legacy continues to help those struggling with this rare disease. According to the site, since the inception of CureDuchenne, life expectancy for those with the disease has increased by a decade and over fifty million dollars have been raised for research, education, and care.

You can learn more about Mats' story in the award-winning documentary, The Remarkable Life of Ibelin on Netflix.

This article originally appeared last year. It has been updated.

Science

Man with muscular dystrophy shows how AI can be used for good with 'Project Gameface'

"Muscular dystrophy takes, and this actually added an ability. So it's the first time I've gained something in a physical sense."

Video game streamer Lance Carr using Project Gameface

Scientific discoveries and technological advancements have always been a double-edged sword. Nuclear fission gave us a powerful source of clean energy and as well as the most destructive weapons humanity has ever seen. The internet gave us unparalleled access to the entire library of human knowledge and also unparalleled exploitation and porn. Social media has connected people around the world in ways previous generations barely dreamed of and also resulted in a toxic online culture that threatens to shred the fabric of society.

Now, after several dozen movies imagining the best and worst-case scenarios, we're at that fork in the road with Artificial Intelligence. The sudden leap in AI tech hitting the mainstream has us all wondering what comes next. But for all the AI fear and uncertainty, there are some pretty incredible, humanity-boosting ways it is being used that may signal some hope for that future.


For instance, AI is allowing facial expressions to control computers. Case in point: a project inspired by quadriplegic video game streamer Lance Carr, whose rare form of muscular dystrophy only allows him to control his face and head movements. Carr had been using a head-tracking mouse (an expensive piece of accessibility equipment controlled by head movement) for gaming, but after his house caught fire during a livestream on Twitch in 2021, he lost everything.

"Video games are my link to the world," Carr explained in a video describing the project. "But I had to stop gaming because this house burnt down along with my adaptive equipment."

Carr got connected with some folks at Google to co-design Project Gameface, a fittingly-named tool that allows users to use facial movements as game controls. Linking several different AI models together, the project uses a mesh of 468 points on your face and converts them into telemetry to make mouse movements and clicks. For instance, raising your eyebrows can make the mouse drag or click and opening your mouth can move the cursor.

The best part is that since the project is open source and only requires a webcam for input, it will be widely accessible to people who want or need to use it. And for those who don't have full use of their limbs, it may be a game-changer as it has been for Carr.

"Muscular dystrophy takes, and this actually added an ability," he said. "So it's the first time I've gained something in a physical sense." He shared that the technology is so precise that he's able to write his name in cursive using only his face through a webcam.

Watch:

Though Google says it's still in development, they have made it available for preview through GitHub for people who want to give it a spin and help contribute to its improvement.

The potential dangers of AI may be making people nervous, but let's be sure not to throw the baby out with the bathwater. In the hands of people who are focused on helping humanity progress wisely and responsibly, AI can be a powerful, life-changing tool that makes people's lives better.

As Lance Carr said, "My hope is to definitely give this technology to everybody who could use it," the gamer added. "I just want to make a lot of people's lives better and easier."

Here's to those using ever-advancing technology for good.

Identity

'Blind Poet' turned the loss of his vision into an opportunity to build a community on Facebook

At his most vulnerable moment, he found the gift of self-expression.

via Meta Community Voices

Dave Steele aka "The Blind Poet."

True

Dave Steele was diagnosed with retinitis pigmentosa (RP) in 2014 and told that he would slowly lose his vision until he was completely blind. Imagine the pain and stress of knowing that every day your sense of sight will slowly diminish until you fall into darkness.

Steele was not only losing his sight, but after his diagnosis, he felt he lost his purpose.

The diagnosis came with an added gut punch: His children also have a 50% chance of having RP. Steele lost his job, his family couldn’t afford the rent on their home and the waiting list for government benefits was nine months. "I was feeling more guilty about the pressure I was putting on my family and that, in turn, was affecting my vision loss as well and I became more anxious and more isolated because of it,” he told Henshaws InSights.

As his troubles mounted, Steele found solace in talking to others coping with sight loss through Facebook community groups. “That was a real massive, massive help to me,” he told Henshaws InSights.


Steele told his new friends in the RP community that he had worked as a singer, and they invited him to perform at a support group meeting. The night before his performance, he had a moment of pure inspiration. He decided to change the lyrics to Ben E. King’s hit, “Stand By Me” to reflect what life was like living with RP.

Dave Steele Stand by me RP awarenesswww.youtube.com

This opened the door for his sense of purpose in life to return. "People were coming up to me saying that the words I had written were able to describe how they had always thought about their journey with sight loss when they were unable to find the words themselves,” he said.

In coping with his disability, Steele discovered a talent he never knew he had.

“I never considered myself a poet before I started to lose my sight. I worked as a singer since the age of 18 and had written a couple of poems and songs about things like previous girlfriends. But it wasn’t until I started going blind that I found the ability to write these words that have helped so many people,” he told Upworthy.

This realization led him to create a community for people dealing with RP. Every day he wrote about everything he was going through in poetry and posted them on Facebook RP groups. The experience was cathartic for Steele and his followers.



His poetry gave people words to describe their journey they wouldn’t have had otherwise, and helped countless people feel they weren’t alone. That’s when Dave Steele truly became The Blind Poet. Steele has created a community on Facebook where thousands come to read his poems, share their stories, connect and support one another. He has written more than 1800 poems, published four books of poetry and written a book for children with low vision, “Austin’s Adventures.”

In 2019, Steele, who lives in Manchester, England, was able to do his first speaking tour of the U.S.

Steele uses his persona as The Blind Poet to clear up misconceptions about people with low vision.

“Being blind doesn't mean that we can’t see anything. Ninety-three percent of people affected by vision loss have some kind of remaining vision. This misconception isn’t anybody’s fault but the lack of education surrounding blindness can cause people like me to become isolated,” he told Upworthy.

Steele believes this misconception makes visually impaired people less likely to use their mobility aids such as a seeing-eye dog or cane in public.

“I’ve been accused of faking my blindness many times by strangers when I’m out and most people living with vision loss have been told ‘you don’t look blind,’ but what does blindness look like?” he added.

Steele wants people to know that “blindness is a spectrum, that there are many different shades and ways to lose sight.”

The Blind Poet’s writing has a big effect on people regardless of their ability to see. “Those affected relate to the words I write and those who aren’t, close their eyes and put themselves in our shoes,” he told Upworthy. “I talk about themes that everyone can relate to whether living with a disability or not."

The poem that’s had the biggest reaction is “The Secret,” dedicated to Steele’s daughter who lives in Scotland. “It’s about the internal struggle with when is the right time to tell your child that they have a one in two chance of going blind when they’re older due to the condition I have,” he said.

“The Secret” By Dave “The Blind Poet” Steele

It took me years to come to terms with how my eyes declined

Through stages of acceptance of slowly going blind

But nothing I could ever do would allow me to prepare To tell my little girl the thing I still don’t want to share

It’s tortured me through sleepless nights consumed my mind with guilt

This secret I have kept from her could break the trust I’ve built

I pray that she will understand the things I tried to do and why I never told her that she could be 1 in 2

For she is still a child and far too young to burden with

a fate that I might pass to her for now’s her time to live

But soon will come a moment when I know she must be told

When all the battles I have won I’ll pass for her to hold

But for every unheard question there's an answer I’ve prepared

They’re written in each line each verse each poem that I’ve shared

For every page I’ve filled I’ve emptied out my heart and soul

So one day she would know the way

That’s always been my goal

So Ellie I hope years from now you’ll be there reading this

Know you can do amazing things whether RP hit or miss

My inheritance to you won’t be a passed down faulty gene

But knowing all life’s beauty that this VIP has seen


The Blind Poet Dave Steel standing in winter clothes in a copse in fall with his seeing eye labrador retriever sitting by his side.Dave Steele

His words also helped a 7-year-old girl named Jackie stand up to bullies in Amarillo, Texas. Her mother taught her one of Steele's poems and she recited it to speak up for herself. The Blind Poet met the family at an event where he spoke and wrote a poem for her. Here's an excerpt:

I may be only 7 but it's getting hard to see

They notice first the cane I hold but "Hi I'm still Jackie"

For I am just a little girl who loves to swim and dance

Will do it every single day if my eyes give me the chance

The classroom lights can sting my eyes

Some days I just black out

I try to do the best I can

Despite the ones who doubt

Don't treat me like a baby

I am small but I am strong

No matter how my vision fades

It's my world and I belong



Steele hopes that everyone who is struggling with RP can find community like he has. “Losing sight can feel very isolating and often it’s easy to feel like we are the only ones going through it,” he told Upworthy. “But through the words in my poetry and the many amazing support groups on social media, realizing we aren’t alone can be the first step in acceptance and taking our lives back.”

Facebook has been a life-changing tool for bringing visually impaired people together. “There are so many incredible support groups and pages that are created by people who are going through the same things,” he told Upworthy. “Just being able to connect with someone like that is so important and it’s been integral to my story.”

Facebook has also given him a voice.

“Without Meta/Facebook I wouldn’t be where I am today or known as The Blind Poet,” he said. “To be able to write a piece of poetry and upload it by clicking a button and sending it around the world and to someone who needs to hear its message is truly an incredible thing.”

Steele finds that Facebook’s accessibility features have improved over the years and helped the visually impaired get the most out of the platform.

“Things like dark mode, allowing users to invert the colors on the display to reduce glare on the eyes,” he said. “Also larger text options and, of course, VoiceOver make sure that we can connect with people just the same as anyone else.”

After facing adversity, Steele has turned it into an opportunity to uplift countless people who are facing a devastating diagnosis. Even though his sight may be fading, his dedication to helping others is only growing stronger.

“Being known around the world as The Blind Poet is something I never take for granted,” he told Upworthy. “Every day, I try to reach more people and replicate the impact my poetry has already had with others. I want the opportunity to speak at more events around the world and ultimately to continue to be a voice for those who are comforted by my words.”

@stronglikestella on Instagram

Stella was born with spinal muscular atrophy (SMA), causing her to need a wheelchair.

When she received her first Barbie, also in a wheelchair, her mother Samantha Lackey saw a spark in her self-esteem, according to Good Morning America.

So as Christmas time rolled in this year, Lackey decided to take a classic holiday tradition and give it a creative, more inclusive spin.

And thus, Bean, Stella’s Elf on the Shelf, became a wheelchair user as well.

With his purple chair and bright pink foot holders, Bean is practically Stella's twin. And having the best time.


Stella and Bean even share the same activities, like rock climbing

Stella regularly climbs the rock wall while at occupational therapy. And with a few craft supplies, Bean climbs too!

Or using a G-tube

Lackey shared on Instagram that Stella has since moved on from her gastronomy tube, but still had some leftover syringes.

Being an elf, Bean, of course, is supplemented with hot cocoa.

And winter time pool parties

So. Many. Floaties.

Just all around embracing the finer things in life

The caption “sELF care Sunday” is just too clever not to share.

Bean also helps Samantha speak up for the disabled community...

Lackey often posts her clever Bean pics alongside informational—and inspiring—captions, like this one:

“Did you know the disabled community makes up 25% of the worlds population. Making it the largest minority group in the world AND one that you can join at any point in your life. We’ve learned how important representation is to raising a daughter with a disability. We’ve also seen how immensely UNDER represented disability really is in our lives. REAL disability, not Drake in a wheelchair (😬) We, as allies need to do better for the generations we’re raising. Normalize disability. Have conversations. Grow relationships. Fight for equal rights and pay. Amplify voices. Focus on mental health.”

...making big topics elf-sized

Lackey shared with GMA that starting a conversation about disability can be overwhelming, especially for parents who never grew up needing to have them. So starting small, with toys and books that better normalize disability, makes the subject easier to approach, both for kids and parents.

It might be a “silly little tradition,” but after seeing the immensely positive impact it has had for Stella, Lackey calls the decision a “no-brainer.”

"We make it a lot harder on ourselves," Lackey told GMA. "If we start with small conversations, whether it be Elf on the Shelf or inclusive toys or a character in a book that they see, or on their favorite TV show, that's just going to help a future generation be inclusive and be kind and be good humans.”

Christmas, 2022?

As for whether or not Lackey plans for Bean to return next Christmas, she’s already let folks on Instagram know that, yes, he will definitely be making a comeback. Perhaps next time, “with pyrotechnics—who knows?”

You can follow Stella, Bean, Samantha, and all their holiday shenanigans on Instagram by following @stronglikestella.