When Stephen Hawking died on March 14, cartoons of a man getting out of a wheelchair and walking toward a great light deluged social media. Tweets that he was “finally free” bombarded feeds, along with posts thanking him for being such an inspiration to people with disabilities everywhere. Hawking, who died at age 76, was the longest-lived person with the motor neuron disease amyotrophic lateral sclerosis. It’s indeed necessary for people with disabilities to see more people like themselves as role models, given how few there still are in the world, but so much of what’s being said about Hawking’s life and death has been distorted by ableism.
But Hawking himself didn’t see his disability as a huge hurdle to overcome in his pursuit of understanding the cosmos: “In my opinion,” he said in “Handicapped People and Science ,” “one should concentrate on activities in which one’s physical disability will not present a serious handicap … My disabilities have not been a significant handicap in my field, which is theoretical physics. Indeed, they have helped me in a way by shielding me from lecturing and administrative work that I would otherwise have been involved in.”
Rest in peace Dr. Hawking. Now you’re free of any physical constraints.. Your brilliance and wisdom will be cherished forever ✨ pic.twitter.com/EQzSxqNTuN
— Gal Gadot (@GalGadot) March 14, 2018
Assuming that people with physical disabilities have too much to overcome in order to achieve greatness, or even function in the world, fuels paternalism and fragilizing. Both make it harder for us to make the contributions we are called to make.
Whether we experience our disabilities as obstacles or not relates to our individual circumstances: If every building a person in a wheelchair needs to access has elevators, if the people they interact with do not treat them as a pity project, if they are able to get their needs met without a fight, if their chosen field “goes on mainly in the mind” —as Hawking says about the theoretical sciences—then disability is not a hinderance.
The point is to ask us how we think about our bodies in the world rather than to assume our bodies are burdens.
My answer is that my disability is not my body—my disability is barriers to access. My disability is a society that lacks sufficient supports, that lacks affordable, available, and appropriate care and social acceptance. It is also a society that upholds, often unwittingly, this idea that greatness confers meaning in one’s life.
This relies on the capitalistic assumption that productivity is the only measure of human value, and it’s why the “free market” has largely failed to provide equally for all people. Subminimum wage allows employers to legally pay a person with a disability less for the same work. For too long, discrimination like this has been built to serve capitalism’s need of profits rather than human need.
Pointing the finger at capitalism’s inherent difficulty in addressing disability is not me denying disability, though. Pretending that people with disabilities are exactly the same as people without disabilities can be just as ableist as overt discrimination. While disabled people are human and have relational, material, and spiritual needs like everyone else, by definition we have additional needs—medical, assistive, accommodational. Disability is the only minority group that most people could join at any moment and, thanks to accidents and old age, eventually do.
Like many conditions, living with ALS, amyotrophic lateral sclerosis, requires assistance. It is a disease that causes the death of neurons controlling voluntary muscle. The cause in 90 to 95 percent of cases is not known; the remaining cases are thought to be inherited. Muscles stiffen, twitch, atrophy, and weaken, causing difficulty in speaking, swallowing, and eventually breathing. There is no cure; the only treatment is palliative: non-invasive ventilation.
The usual onset of ALS is between ages 50 and 60. Hawking was diagnosed in 1963 at the age of 21, when he was a doctoral student at Cambridge; his doctors told him he had about two years to live, which is the average life expectancy for someone with ALS. Hawking continued his studies. He struggled with depression after his diagnosis but eventually was able to get to a place of genuine acceptance. But he would not have been able to carry on without help. “I have managed, however, only because of the large amount of help I have received from my wife, children, colleagues, and students,” he said.
— CaricaturasVE (@CaricaturasVe) March 14, 2018
In his death, Hawking is not now “free.” It is ableist to imply, as the graphic of a person getting out of a wheelchair and walking toward the light does, that only people who can walk can be fulfilled—and that those who cannot walk can only be fulfilled in death. The idea that disabled bodies are things to be free of suggests an intolerance of them, which is inherently dangerous; after all, it becomes easier to ignore cruelty or justify indifference. The lives of people with disabilities are just as valuable as those without disabilities; the way we think about disability impacts us all. If death is liberation, it is so for everyone, disability or otherwise.
Megan Wildhood is a writer, speaker, and advocate for the marginalized. She is the author of the poetry collection Long Division.