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disabilities

A man with ALS communicating via brain waves.

I can’t imagine worse torture than being stuck in a locked-in state caused by amyotrophic lateral sclerosis (ALS). ALS is a disease of the nervous system where nerve cells slowly break down, causing muscles to weaken throughout the body.

Patients who survive through the weakening process eventually reach a "locked-in" state where even though their brain still functions, they are completely paralyzed with their eyes mostly closed.

In this state, the person is unable to communicate. People with ALS typically live two to five years after being diagnosed and usually die from paralysis of the respiratory diaphragm.

However, life may get a little better for people with ALS after a new development that has allowed a man to form sentences using only his brain waves. In 2022, Researchers at the Wyss Center for Bio and Neuroengineering in Geneva, Switzerland, developed a brain electrode that they implanted into a 36-year-old man in a locked-in state that has allowed him to communicate.

“Ours is the first study to achieve communication by someone who has no remaining voluntary movement and hence for whom the BCI is now the sole means of communication,” said Dr. Jonas Zimmermann, a senior neuroscientist at the Wyss Center.

“This study answers a long-standing question about whether people with complete locked-in syndrome–who have lost all voluntary muscle control, including movement of the eyes or mouth–also lose the ability of their brain to generate commands for communication,” Zimmermann added.

After three months of unsuccessful attempts, the patient was able to spell “yes” or “no” and to form sentences through a speller program.

One of his first requests was to be put in an elevated position when there are guests in the room. He also was able to ask for one thing he probably needed more than anything at that point: a beer. He had to be dying for a beer. He also asked for the band Tool to be played “loud.”

The electrodes allowed him to interact with his 4-year-old child, who he was able to call “my cool son.” He also asked for specific foods to be put into his feeding tube. “For food, I want to have curry with potato then Bolognese and potato soup,” he said.

This was the first time that brain electrodes were even implanted into a locked-in patient and researchers had no idea if they would work.

The scientists behind the groundbreaking technology are now seeking funding to provide similar implants for other people with ALS. “This is an important step for people living with ALS who are being cared for outside the hospital environment,” said George Kouvas, chief technology officer at the Wyss Center.

It’s stories like this that remind us that we should never take for granted the ability to communicate our basic needs. Let’s hope that the man with ALS will be able to drink as many beers as he likes and to be able to rock out to Tool as loud as possible for the rest of his days.


This article originally appeared three years ago.

Julian Worsham gets a new cart.

Six-year-old Julian Worsham of Beaverton, Oregon is like a lot of other first-graders: he loves Super Mario and Taekwondo. But he has achondroplasia, the most common form of dwarfism, and goes to a school that wasn't built for kids his height.

"He's born into a world that just, in some ways, is not built for him," Julian's father, Brett, told WHAS11.

His mother did a walk-through before his first day at school to make sure he wouldn't run into any problems because of his height but forgot to check the cafeteria. [We] "noticed that where the food was, was right at his head," Heather told the Beaverton School District. Then, to make things more of a struggle, he had to carry his tray outside to the lunch benches.

The school made him a makeshift cart out of an upside-down milk crate on wheels to help him transport his lunch from the cafeteria to the benches.

"When I saw it I thought, 'Wow,'" said Enedelia Mottram, who's served lunch for the school district for 18 years. "I just wanted to help Julian, because I mean his head barely reaches the lunch line. He can't see anything."

Julian's first cart wasn't cutting the mustard.

via Beaverton School District

That night, she talked to her husband, James, a metalworker, to see if he could come up with something better. He got his team together at Wright Manufacturing in Portland to create a new cart that allowed Julian to transport his lunch tray and see over the counter.

James told the Beaverton School District that he wanted to make something that Julian would be "proud to push around."

James and his team put together a badass cart with adjustable, handlebar grips just like a motorcycle that has a stool inside so he can reach the countertop. It is adorned with flames and a personalized license plate that says, "JULIAN."

Julian's parents were blown away by the care and creativity that was put into creating his cart.

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"They took the time to get those license plates with his name, which is just like, they just really put a lot of heart into it. So when I saw it, the first thing I saw was actually a picture of James and his team who made the cart and I cried. It's just such a sweet thing," Heather said.

Julian loves the license plate and the flames and is now able to grab his lunch and get out to the benches in style.

"He's independent now," said Mottram. "Before, a staff member [would] have to be there to help him," she said.

Heather hopes that the story will inspire others to reach out and help other people in need.

"There's just wonderful people in this world that, you know, they have their eyes open. They're seeing needs that need to be met and they're meeting them. So I hope that other kids can get their needs met through this," she said.


This article originally appeared three years ago.

Identity

Person who uses a wheelchair shares tips for being less weird around them

"It's wild to me how often people will just roll me out of their way. Please don't do this."

A wheelchair user offered some helpful tips for how to interact with them in daily life.

One of the best things about social media—besides the hilarious cat videos—is how it gives us all an opportunity to learn from one another. The ability to share an experience or a piece of wisdom or advice and have it be carried far and wide can be incredibly useful, especially when it comes from someone whose voice may not be heard as often as it should.

A perfect example is a 2022 thread by Ada Hubrig (@AdamHubrig) on Twitter explaining how and how not to interact with a person in a wheelchair. Hubrig says using a wheelchair has been "life-changing in the best way" for them, but the way they are treated when they are using a wheelchair can be annoying, frustrating, hurtful or just downright weird.

Some people don't have regular interactions with people who use wheelchairs and may have questions about what's appropriate and what's not. Some people might make assumptions about people using wheelchairs or be completely oblivious to how their prejudices are impacting their behavior. Hubrig's thread not only clarified some common issues wheelchair users deal with, but also opened up the conversation for people to ask some of the less obvious questions.


Hubrig opened their thread by explaining that they actually love their wheelchair, as they can't stand or walk for more than 10 minutes without it. However, they loathe how people treat them when they're using it.

Then they shared some tips on how to do better:

"First, remember that wheelchair users are people," they wrote. "We are more similar to you than different, we're just sitting down while you're standing up. You're likely around other people who are sitting as you stand all the time. Don't make it weird."

"Second, remembering that we're people, respect our autonomy," they continued. "If we're speaking and you have a question for me, don't ask my partner who is standing. As an example, medical professionals will often ask my partner my symptoms when I am RIGHT THERE. Please notice us."

The third piece of advice was to never touch a person's wheelchair or other mobility or medical advice unless you have been given permission. Hubrig said that people will often just roll them out of the way.

Yeah, don't do that. You wouldn't pick up a standing person and move them out of the way (hopefully). Same concept.

Hubrig went on to explain that no one is entitled to anyone else's medical history or trauma. "I get that you may mean well, but asking 'what happened' can be more difficult for some people than you realize," they wrote. "It's a lot of emotional labor to answer."

On a related note, don't ask about people's genitals. Ever. Seriously.

A tip for parents: "Please don't let your kids crawl on me or my wheelchair. My wheelchair isn't a toy."

"I like kids mostly, I do," Hubrig wrote. "But even if we weren't in a pandemic, I don't want any stranger up in my personal space like that. Once a kid ripped my ostomy bag off me. No plz."

Also, don't make judgments about a person's need for the wheelchair. "Some wheelchair users, like myself, don't use the wheelchair full time," Hubrig wrote. "I can walk/stand about ten minutes at a time, and use a cane for short distances. If you see a wc user standing/using a cane/whatever, don't assume we're faking. We don't use a wc for fun."

Not being believed can be a major barrier to people with disabilities utilizing the tools they need to live as fully and functionally as possible. "I have talked to many people whose life would be better with a mobility device but they don't use one. Because of how we treat people who use mobility devices."

That is a tragedy.

Finally, Hubrig summed up the basics:

"1.) Wheelchair users/disabled people ARE people. Act as such.

2.) Mind your business."

Seems simple enough, but as we all know, humans have a remarkable ability to not follow simple instructions.

One of the common questions well-meaning people had was whether or not they should offer to help a person in a wheelchair if it appears they are struggling. On the one hand, you don't want to assume someone needs help just because they're in a wheelchair, but on the other, you don't want to leave them struggling if they do need help.

The consensus was that asking if someone needs help is almost always appropriate. Just don't assume they need help and jump in without asking (barring any obvious emergencies, of course).

Another question some had was whether it's appropriate to lean over or kneel down to talk to someone in a wheelchair. On the one hand, it might feel more respectful to put yourself on the same eye level as the person in the chair. On the other hand, you don't want to make them feel like you're infantilizing them. (This question was asked by a person who is hard of hearing, which adds another layer to the question as that's an accommodation that needs to be considered as well. But it was also asked by someone who simply wanted to know which wheelchair users preferred.)

Responses from wheelchair users varied a bit, but most agreed that standing was fine for brief exchanges, but pulling up a chair to talk to them at a similar height was appreciated for long conversations. It can be straining on the neck to look up at someone for long periods.

So much boils down to basic empathy and the Golden Rule. If you were using a wheelchair, what would feel rude or disrespectful or annoying? How would you want people to talk to or interact with you? The truth is any one of us may find ourselves with a disability that necessitates a mobility or medical device at some point in our lives, so the more we normalize accommodations and, you know, basic courtesy and compassion, the better off we'll all be.


This article originally appeared on 2.24.22

Videos

They were targeted by a cruel TikTok challenge. How they responded is an example to us all.

These disability activists are who our kids should look up to as role models.

Back in the summer of 2020, a cruel prank began circulating on TikTok that showed how the popular social media platform can be used in some of the oldest forms of bullying. Dubbed the #NewTeacherChallenge, parents shared cruel videos of them telling their kids that they have a new teacher, showing the kids the face of someone who is disabled or who has a facial deformity or disfigurement, and then filming the child's reaction.

If that sounds horrible, it's because it is.

The people whose faces were being used in this challenge have every right to be angry and hurt. There is no excuse for this kind of behavior, and no one would blame them if they colorfully told the whole internet to shove it.

But two of the targets in these challenges are well-known disability activists who somehow manage to always take the high road, serving as an example to the rest of us. Their ability to respond to people's basest behaviors with dignity and strength, calling out the cruelty with clear and calm eloquence, saying over and over again, "It is absolutely not okay to treat me or any other human being this way and here's why," is awe-inspiring. If you want a role model for your kids, look to these ladies.


Lizzie Velasquez was born with a rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome, which prevents her from putting on weight, among other physical symptoms After being dubbed "The World's Ugliest Woman" at age 17, she became a popular of advocacy for people who are different, for anti-bullying, and for teaching empathy and compassion. She continues to be an ongoing target of horrible memes and jokes, and yet she continues to respond by teaching valuable lessons and showing her own kind heart with her motivational speaking.

She shared a video when the New Teacher Challenge first started surfacing, explaining how the prank was not okay:

This week, she posted another video showing how not to teach your kids about empathy utilizing this challenge. Some parents might use it as a teaching opportunity, getting kids to see why their own reactions are unkind, but if the parent's own reaction to the reaction is to laugh, then kids can get confused and the lesson gets lost.

Responses to Velasquez's videos have been largely positive, but of course she has also received even more cruel messages. And again, she reacts by stating that these people "need help figuring out how to channel their own anger/hate in a way that doesn't hurt someone else." (I would personally like to tell these people to shove it on her behalf, but I will try to follow her example.)

Melissa Blake is another disability activist and writer who has been the subject of countless jokes, memes, and pranks on social media. She wrote an article for Refinery29 about her face being used as a prop for unkindness-as-entertainment in the New Teacher Challenge.

One thing she pointed out was that the parents making these videos aren't just being cruel to her and others with disabilities, but also to their own children.

"I can't help but feel sorry for their children," she wrote. "Imagine your mom filming a vulnerable moment, one where you can't help but burst into tears, and they actually post it for the whole world to see. How is humiliating your child, or watching other children go through that, a source of amusement?"

She was also direct about the impact this cruel treatment has on her personally:

"I want to be clear: I am violated. Every single time. Each photo, taunt, and cruel word is a clear violation of my dignity and my worth as a human being. And every time these platforms fail to take action, they're sending the message that this bullying is okay. So many disabled people have become inured to our appearance being mocked. That's not something we should ever have to get used to."

Blake battles the trolls in a delightfully subversive way—by insisting she be seen in all her glory, refusing to hide away the way some tell her she should, and letting bullies know they will not win in her world.

Not only should we be teaching our kids to understand and embrace that some people are going to look different or move differently or have different abilities, but we should also show our kids outstanding examples of strength, resilience, and respect they can look up to. These women fit that bill to a tee.


This article originally appeared on 8.31.20