The death of Stephen Hawking has prompted an outpouring of well deserved tributes that highlight his humor, heart, and astounding scientific achievements. His legacy as a disability rights activist is just as noteworthy. As he wrote in the preface to the World Health Organization’s first World Report on Disability in 2011, “We have a moral duty to remove the barriers to participation, and to invest sufficient funding and expertise to unlock the vast potential of people with disabilities.” He spoke openly and often about how he could never have achieved what he did if not for the resources afforded to him by the U.K.’s National Health Service, and spent his final days battling cuts to the system that “saved him” following his diagnosis with amyotrophic lateral sclerosis (ALS) at the age of 22.
For many people with disabilities, Hawking’s example was invaluable—a source of empowerment and reassurance as well as a means of pushing back against ableist prejudices. Elsie Tellier, a young academic with cystic fibrosis, credited Hawking with paving the way for her and others; in the words of her Harvard classmate Simon Sun, “his life showed that there is so much more than ability. For an 8 y.o. who just had all physical function stripped away, this was everything.”
Fellow activists expressed their gratitude at Hawking’s outspoken advocacy for disability rights and his fight to preserve the NHS:
Others drew attention to the systemic barriers that Hawking fought to dismantle, calling for the many academics paying tribute to reflect on their own practices:
Perhaps the best encapsulation of Hawking’s views and contributions as an activist comes from the physicist himself. In 2014, he addressed UNESCO’s International Conference, speaking on the role information and communication technology have to play in empowering people with disabilities:
Because I have had such phenomenal technological support, I feel a responsibility to speak for others who have not. I have not been lucky to contract ALS, but I have been lucky to have this help. I want to use my high profile to raise awareness of issues around disability and communication. Recently, my communication system broke down for three days, and I was shocked by how powerless I felt. I want to speak up for people who live their whole lives in that state. My hope is that the kinds of technologies I have trialed and helped develop will become easily and cheaply available to all who need them. We need to make sure this technology becomes available to those who need it so that no one lives in silence. Please listen to me. I speak for the people you can’t hear.
To have lost a voice so committed to doing so is a tragedy. His absence will be deeply felt.
One more thing
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