Celebrating Stephen Hawking and Also Celebrating Disability

Upon his death, persons with disabilities were dismayed by reactions centred on how his “suffering” had finally ended, and illustrations depicting him leaving his wheelchair and 'ascending' into the beyond.

The recent passing of Stephen Hawking has been met with expressions of grief as creative as the man himself. Unfortunately, ableism has abounded in this collective celebration of the life of arguably the most famous person with disability in the world. And disability rights activists have been calling it out.

The disability rights movement is a relatively young human rights movement, and isn’t always met with the empathy it demands. The idea that disability is suffering and pain is well entrenched in the public psyche. In fact, the movement now chiefly subscribes to the ‘social’ model, which is to say that people who may have impairments are disabled by lack of access to infrastructure and communication and by attitudes around them that create barriers. That it is these barriers to participation that should be addressed by the sector by enacting rights-based legislations prohibiting discrimination, and promoting new technology and services to support people’s efforts to communicate, move and make decisions.

Hawking was 21 years old when he was diagnosed with amyotrophic lateral sclerosis. His prognosis was poor, and his condition deteriorated even as he was finishing up his education and beginning his academic career. Within a decade, only his close family and friends could understand him. He began to use a wheelchair reluctantly.

In 1985, when visiting CERN (the European nuclear physics lab in Geneva, Switzerland), he developed a life-threatening condition; his wife was even asked if she would rather turn off life support. She refused, instead opting for an emergency tracheostomy that had doctors remove whatever there was left of his voice. Instead of institutional care under the National Health Services of the UK, private financial support enabled Hawking to live at home and continue working, with the support of well-trained nursing staff. Hawking also received the support of emerging technology in alternative and augmentative communication. His computer, sponsored by Intel, is operated by cheek movements.

Along with his pioneering work in cosmology, he became a popular cultural icon. For the disability sector, he stood for a person with disability thriving after barriers to his participation were removed, but also set the bar very high for the ‘productivity’ of persons with disabilities.

Hawking himself acknowledged how his value created a form of privilege among persons with disabilities in the foreword to the World Disability Report, 2011.

I have benefitted 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 synthesiser which allow me to compose lectures and papers, and to communicate with different audiences.

But I realise 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 very 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 fulfilment.

Upon his death, persons with disabilities were dismayed by the number of reactions centred on how his “suffering” had finally ended, how he was “free” from “constraints”, and illustrations depicting him ‘ascending’ into the beyond, leaving his wheelchair behind (as much as this might be ironic, considering Hawking’s atheist views).

ablebodied friends, please be very critical of the articles/pics you share regarding Dr. Stephen Hawking's death. a lot…

Posted by Mike E Williams on Wednesday, 14 March 2018

Activists have argued that this is just another means of devaluing the lives of persons with disabilities. Hawking wasn’t trapped in his wheelchair; it was the wheelchair that set him free. When Robin Williams, who experienced depression for a large portion of his life, committed suicide, he was mourned by the Academy for Motion Picture Arts and Sciences with a still from the movie Aladdin (1992), where Williams voiced the genie, with the caption “Genie, you’re free”.

This isn’t merely the outrage of ‘snowflakes’. Depicting death as a desirable escape from disability undermines the experiences of persons with disabilities as living beings. Assumptions on the poor quality of life of persons with disabilities and the fact that they would be “better off dead” have policy implications as well. Its relation to eugenics must also be acknowledged. There has been discomfort with efforts to promote assisted suicide and euthanasia for persons with disabilities from within the disability sector. Considerable government resources are spent in ‘preventing’ disability, including through screening and abortion of foetuses with Down syndrome and other impairments, instead of breaking stereotypes about the poor quality of life experienced by the disabled.

People have been hoping that that policymakers derive inspiration not from Hawking himself but from the outcomes of support provided to the disabled. There is a considerable cost to excluding persons with disabilities from society; given that the majority of them in the world are still restrained by barriers to participation, any estimate would come up short. Existing resources being diverted to services that perpetuate segregation, infantilisation and dependence need to be repurposed towards giving the disabled the supports they need to realise their own potential. To – in a tribute to Hawking – “to look up at the stars” and not at their impairments.

Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.