variety.com
‘SpongeBob SquarePants’ Creator Stephen Hillenburg Reveals ALS Diagnosis
Stephen Hillenburg, creator of the long-running hit Nickelodeon series “SpongeBob SquarePants,” has revealed that he has been diagnosed with the neurodegenerative disease ALS. The 55-ye…
By Andrew Wallenstein

My best wishes go out to Stephen Hillenburg, who’s been diagnosed with ALS.

Ableism almost killed Stephen Hawking in the 80′s.

This is a casual reminder that Stephen Hawking was almost allowed to die due to ableism.

Stephen got so sick because the advance of his ALS made his larynx weak and it wasn’t doing the job of keeping spit and food out of his lungs when he swallowed. In the 80′s, he contracted aspiration pneumonia while at CERN. He got rushed to a hospital where he was placed in a medically induced coma and breathed via a ventilator. Doctors urged Jane (wife) to pull the plug because “he’s too far gone”. 

Think about it: Doctors put Stephen into a position where he couldn’t answer for himself, tried to tell his wife that he was too far gone and tried to tell her she should pull the plug as an act of mercy. 

I doubt that would have been said if Stephen wasn’t so visibly disabled by his ALS. It’s funny how people in the medical field tend to be so quick to give up on a patient if they already have a visible disability when they are brought in, but will throw all the medicine and machines they’ve got at somebody who isn’t visibly disabled. I don’t think doctors even realize they have this bias.

Thankfully, Jane stood up to the doctor. She said no, declared that Stephen must live and had him returned to Cambridge. She knew her husband better than the doctors. She saved his life.

Stephen had a tracheostomy done, which prevented him from speaking, and he spent some time on a ventilator while he recovered from the pneumonia. He initially communicated via a letter board by raising his eyebrows when the right letter was chosen. Then he went on to get the computer that gave him his famous voice. 

A little aside– Stephen has the option to get a new, more “human” sounding voice, and he refuses because he’s grown quite attached to the “robot” voice he’s so well-known for. He sees that as his voice now and identifies with it. (”Even though it gives me an American accent,” he once joked.)

Later, he had a laryngectomy because his larynx was causing a lot of trouble with swallowing food. Getting rid of it increased his quality of life. As far as I know he’s still swallowing just fine and eats and drinks by mouth with help from his assistants. A video of Stephen talking about the tracheostomy and laryngectomy can be found here. (No surgery images, but he describes medical tests and talks about the problems with eating.)

He communicates nonverbally with his caregivers using just facial gestures. One of them said Stephen can just look at him a certain way and he’ll know whether he’s saying he needs attention or everything’s fine. I read somewhere that Stephen grinds his teeth to express disapproval. (Yo, behavior is communication!) He communicates with more than his AAC device, it’s just a matter of learning to read him like his caregivers do.


‘No quality of life,’ the doctors said in the 80′s.


(Sarcasm) 

I guess this is ‘no quality of life’.

(/sarcasm)

[Stephen giving lectures at a university.]

[With the cast of The Big Bang Theory.]

[Experiencing zero gravity.]

[Looking sharp at the BAFTA’s!]

[In his office at Cambridge University, doing what he loves– trying to find the real theory of everything.]

(Sarcasm) 

Oh yes, his quality of life is just awful, isn’t it? 

(/sarcasm)


The only person allowed to determine Stephen Hawking’s quality of life is Stephen Hawking himself. And guess what? His life is great right now!

He almost wasn’t here. Ableism nearly ended his life in the 80′s.

Thankfully, he’s still around to sass people and keep us curious about the universe.

Here’s a documentary where Stephen tells his own story in his own words. CC’s are available for those with hearing or audio processing issues.

* * * WARNING: Video has flashing lights that may upset seizures or migraines.
* * * TRIGGERS: Dramatized hospital scenes, food consumption and alcohol consumption.

https://www.youtube.com/watch?v=hi8jMRMsEJo (not my video)

Btw the girl in the thumbnail is goofing off with him by making that face.

Dara O’Briain meets Stephen Hawking.

* * * WARNING: Video has flashing lights that may set off seizures or migraines.

* * * TW: A very frank discussion about assisted suicide starts at 11:07 and ends at 11:40, so you can skip the video ahead if that conversation is upsetting or triggering. I will note that Stephen is very emphatic that it should only be an option for terminally ill people.

https://www.youtube.com/watch?v=Bf9WfTot5aU

What I love about this video is we get to see the difficulty Stephen Hawking has with trying to talk to people in real-time right in the very beginning. Poor Dara fanboyed a little bit and it got awkward for a few minutes. It was cute lol.

Later, Stephen mentions that he feels lonely at times because people are afraid to talk to him. He tells Dara that he’s shy and (with an amused smile) gets tongue-tied when trying to talk to people he doesn’t know. He also notices it when people ask him something and then wander off without waiting for his response. (Anyone who does that is rude!) Stephen’s team is constantly working on software and working with the facial muscles he can still use to keep him able to interface with his computer and talk.

You see so much of Stephen’s personality in this video. He shows us how stubborn he is when he says “I’m damned if I’m going to die before I have unraveled more about the universe!” 

Wait till you hear his nerd jokes towards the end. You’ll be glad you watched this. 

Basically, Stephen Hawking is a huge geek who happens to be a famous physicist. 

Now my feelings hurt :(
  • So late today, Stephen Hillenburg, AKA the creator of spongebob squarepants announced he has ALS which is terminal, as a SBSP fan since I was a child this literally kills me inside, right now he hasn't stated how long he has but he said he'll keep going on the show as long as he can... this is a death sentence medically and we can only hope he makes it to the 3rd spongebob movie set to come out in 2019.
I may be in the USA, but I know it’s January 8th in the UK at the time I’m posting this, soooo... Happy 75th birthday, Stephen Hawking!

Stephen Hawking is not autistic, BUT…

If you took his computer away, he would fit into the category of a nonverbal person who needs lots of daily help and can’t make his communications understood*. He started out able-bodied and slowly became disabled as his ALS progressed. That means he was able to prove his competence long before he needed a wheelchair or AAC device.

Communication is a very slow process (one or two words a minute) for him because he has to compose what he wants to say letter by letter using the sensor on his glasses, which reads his cheek movements. Interviewers often send him their questions in advance so he can prepare his responses before the interview. Otherwise, it would take him all day. “Unscripted” things often edit the long periods between someone saying something and him responding.

A fun aside: Stephen’s cheek switch makes beeping noises when he’s typing. He spends a lot of time typing while being wheeled from place to place.

One of Stephen’s frustrations is he notices people are afraid to talk to him, or if they do they go off to something else while he’s trying to compose a response. Rude! I swear, if I ever met this man and someone tried to engage me when I’m waiting for him to compose a response, I will put my hand up and say “Excuse me, I’m talking to him right now” and return my attention to Stephen. I’m willing to be patient for him because I understand the frustration of feeling pressured to say something and not being able to say it fast enough.

Also, he has admitted that he’s shy and finds it hard to talk to people he doesn’t know. That’s gotta be hard when a lot of people ‘know’ him!

It’s kind of ironic that he popped up on the world’s radar because of his book A Brief History of Time. Suddenly the world knew the face of the really smart guy in the wheelchair with the robot voice. He’s as much of a pop culture icon as he is a physicist. He been in Star Trek: the Next Generation, The Simpsons and The Big Bang Theory. He even mentioned that he would love to play the big bad villain in a James Bond movie because he thinks the wheelchair and robot voice would fit the part XD!!

But consider this: what if Stephen Hawking was just a factory worker or store cashier? What if he was born disabled and unable to speak? Totally different picture, especially since he grew up in an era where disabled people were often institutionalized. 

Stephen’s visibility has done something else: it’s normalized his very visible disability. I don’t think a lot of people see him as “other” or “lesser”. His wheelchair and speech synthesizer voice are part of his persona, part of him. He’s adamant about keeping the voice he’s been using since the 80′s because it’s so distinctly him.

I dare you to try and picture modern-day Stephen Hawking without the wheelchair. It’s impossible, isn’t it? Seeing him sitting in his wheelchair with his computer screen mounted in front of him has become so normal that he looks tiny and vulnerable without it. 

Interestingly, one of the only occasions I’ve ever seen him photographed without his wheelchair (and sans glasses, too!) was when he experienced zero gravity. He absolutely did not need his AAC device to tell anyone he was having fun, it’s obvious by his expression.

(Above photos were before he started using a ventilator. The tube coming from his pantleg contained all the leads that monitored his vital signs. The apple was a nod to Isaac Newton. :D )

Stephen Hawking is probably one of the most famous disabled people in the world. Not everyone knows his name, but they know “that science guy in the wheelchair with the robot voice”. He is able to shine and show his knowledge because people worked with him to help him communicate effectively again when an emergency tracheostomy rendered him unable to speak. 

He can’t drive his wheelchair anymore due to his ALS. His current chair has two joysticks. One in the usual place and one behind his headrest. He currently uses a ventilator, but I don’t know for sure if it’s breathing for him or just assisting his natural breathing. He needs other people to do literally every physical task involved with taking care of himself. 

And you know what? You don’t see videos of Stephen Hawking’s caregivers helping him on or off the toilet. The man could be wearing a diaper for all we know. He might have a catheter and colostomy for all we know. But we don’t know because his caregivers don’t tell the entire internet about it. You don’t see videos of him being bathed or having his clothes put on. People respect his dignity and privacy for the most part.

While I am curious about how he gets taken care of in day to day situations, I understand that it’s none of my business unless he wants it to be.


So what’s the point of this post besides acknowledging Stephen Hawking’s birthday?

Why can’t the caregivers of nonverbal autistic people who need lots of daily help and can’t make their communications understood treat autistic people with the same amount of dignity offered to Stephen Hawking?


Stop making disabled people mere spectators in their own stories. Give us autism documentaries by autistic people.

Once again, Stephen Hawking shows us how it’s done. Here’s a documentary about his life, narrated by him. It was made in 2013.

* * * WARNING: Video has some flashing that may trigger seizures or migraines. 

* * * TW: Needles, food, alcohol and abortion mention.

https://www.youtube.com/watch?v=hi8jMRMsEJo




*He has some facial gestures that he uses to communicate with his closest caregivers, but I haven’t been able to see them clear enough to pick them out.

Stephen Hawking in zero G!

Having the time of his life. He said that nobody had ever seen his smile get as big as it did that day. Truth.

He literally looks like a kid at Christmas after seeing all the presents piled up under the tree.

Here’s a video with some clips of his zero gravity flight. This was before he was on a ventilator full-time, but I don’t think that would stop him if he got the opportunity to go out into space. 

* * * WARNING: Flashing lights that may upset seizures or migraines. * * *

https://www.youtube.com/watch?v=Ss1AM5aPGi8 

This is really inspiring. And not in an inspiration p0rn way, either. This is Stephen showing that disabled people can go into space.

I’m sure somebody could modify a chair he can be gently strapped into and create mounts for it aboard places like the ISS where he can sit and participate in the action without worrying about bumping his head or accidentally disconnecting from his ventilator. Hell, they could probably do it with the seat of his usual wheelchair by removing the base where the motor and wheels are and finding some way to mount his ventilator on the bottom or even the side of the chair– cuz it’s not like gravity is going to make it tip! :P 

Transporting him around the ISS in zero gravity would be easy, strap him to a stretcher (to protect his head and limbs from flopping around), grab his ventilator and guide him to wherever his chair is mounted. Get him seated properly, buckle him in and put his glasses on. Finally, get his computer online and he’s good to go. His glasses might need a strap to keep them on his face since he can’t just reach out and grab them if they were to dislodge and slip off. (A general aside, he wasn’t wearing his glasses for his zero g parabolic flight, hence my mentioning them. He kinda needs those to see properly and talk. ~_^)

I know the cost of taking someone with such support needs into space is largely prohibitive, but I would still love to see Stephen leave the atmosphere just once in his life. I hope he gets the opportunity to do something really cool like that– imagine if he got to spend a few days aboard the ISS. He would literally be a pioneer and his trip may help people come up with ways to accommodate disabled astronauts and, later on, lay people will venture out into space in the future.