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.
I guess this is ‘no quality of life’.
[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.]
Oh yes, his quality of life is just awful, isn’t it?
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.