Disability Awareness Day: Lessons from Stephen Hawking
by Yorick Peterse
Yesterday, December 3rd, was the International Day of Persons with Disabilities. This Awareness Day first initiated in 1992 by the United Nations with the aim “to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life”.
Part of the rights of persons with disabilities is to live a life as close as possible to ‘normal’. Such a life, includes having the ability to perform a desired job, if reasonable accommodations can be made to allow this. When this concerns working in science, some fields can more easily accommodate persons with disabilities than others. Think of making an office environment wheelchair accessible versus realizing wheelchair access in a sterile laboratory environment. Yet, before one instantly looks at the limitations of the efforts that can be made, one should also consider the possibilities of enabling some people to work as scientists.
To emphasize this, let’s consider one of the best-known living scientists of any field at this time: Stephen Hawking. Hawking was diagnosed with motor neuron disease (ALS; well-known from the ice-bucket challenge) in 1963 at the age of 21, shortly after starting his graduate program at Cambridge University. His initial prognosis was a life-expectancy of only two years, as is common with ALS. However, despite his difficulty walking and his slurred speech, his supervisor encouraged him to continue his work. Indeed, he successfully submitted his thesis in 1966, and won a fellowship to continue working as a scientist. Over the following decades, the progressive nature of his disease required changing accommodations from his environment. By the late 1960s, he was bound to a wheelchair, and he and his family had to start a campaign for wheelchair accessible facilities at the university in the 1970s. Several graduate students have lived with Hawking and his family to assist with his care and work. In the late 2000s, he lost the ability to drive his wheelchair independently. His speech gradually deteriorated to such an extent that he changed from using interpreters; a spelling card directed with eyebrow movements; a hand-, and later a cheek muscle-guided computer; to eventually a word-predicting program based on his brain activity and facial expressions. Due to an environment that enabled him to work, Hawking was able to make outstanding contributions to theoretical physics and cosmology; his research has led to an entirely different understanding of the universe.
Apart from his contributions to academia, Hawking has also actively brought science to the broader public with his own popular science works, and by motivating others to participate in science communication. Moreover, after initial reluctance, he became an advocate for the rights of persons with a disability, and showing the potential of persons with disabilities.