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.

Seit diesem Augenblick weiß ich, dass Liebe schneller sein kann als unser Bewusstsein. Liebe ist etwas, auf das man keinen Einfluss hat, sondern etwas das einen findet - ohne Grund, ohne Kommentar und ohne, dass man sich dagegen wehren kann. Liebe kann man nicht erklären, sie trifft einen wortlos - mitten ins Herz.
—  tiefenposie
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.