On 14th March 2018 when we woke up, the world collectively experienced a huge loss. We read about the death of Stephen Hawking, the globally renowned theoretical physicist and cosmologist known for his work on general relativity and quantum gravity, in the context of black holes. Hawking had a rare progressive motor-neuron disease, Amyotrophic Lateral Sclerosis (ALS). He was diagnosed at the age of 21 and eventually lost motor ability in his hands and legs. He became a quadriplegic and started using a wheelchair. In 1985, he lost what had remained of his speech ability and began to use a computer program called the “Equalizer” to communicate.
Apart from his path breaking work in theoretical physics, Hawking was also an advocate for people with disability. He said “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”.
It was expected that his death would bring an out-pour of condolence messages and expressions of grief from across the globe. But what has disappointed people with disabilities, and disability advocates are the kind of messages these expressions of grief have carried. We read countless status updates, tweets, articles praising Hawking and his achievements. Millions of people mentioned how he achieved all that he had despite being someone with disability.
It clearly shows the assumption many have about people with disabilities as being weaker than others, specially in terms of intellect. In the case of ALS, there are no intellectual dysfunction, but the mindset is still operating.
Secondly, there was also this depiction of how his death freed him from his wheelchair. How he was no longer physically confined to it.
The tools and technology that people with disabilities use are NOT what confines them. In fact, the specialized wheelchairs and communication systems that Hawking used, enabled him to do more. It allowed him to overcome the barriers imposed on him by both his physical impairment and by the environment in which he lived. It is because he had the top quality accessibility technology that he was able to achieve his potential.
The point of view that implies death is better than living with a disability, is problematic. It’s absolutely untrue, if accessible and inclusive environment is provided, with which people with disabilities can live a dignified life.
Hawking himself wrote,
“I have benefited from access to first class medical care. I rely on a team of personal assistants who make it possible for me to live and work in comfort and dignity. My house and my workplace have been made accessible for me. Computer experts have supported me with an assisted communication system and a speech synthesizer which allows me to compose lectures and papers, and to communicate with different audience. But I realize that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is clear that the majority of people with disabilities in the world have an extremely difficult time with everyday survival, let alone productive employment and personal fulfillment.”
He obviously knew about the challenges and obstacles that persons with disabilities face, and how important it is to advocate for access to technology and infrastructure that reduce barriers for them. Such resources do not indicate shame. They are symbols of empowerment, of freedom and of unlimited potential of human beings.