Fighting ALS by transforming into a cyborg
Sometimes we come across articles that resonate for a long time.
Like this fascinating portrait by LaVonne Roberts for Input Mag about the cyborg pioneer Dr. Peter Scott-Morgan—a British-American scientist who is almost completely paralyzed due to amyotrophic lateral sclerosis (ALS), but has not come to terms with the diagnosis.
Instead of surrendering to the disease, he has thrived and transformed into a cutting-edge cyborg.
Becoming the world's most advanced cyborg
Scott-Morgan’s experience is both a love story and a technology story. In 2017, he learned he had a variant of Motor Neurone Disease (MND). MND drains the body. Bit by bit. And there is little that can be done to prevent, slow down, ease, or reverse this process. Slowly but surely, Scott-Morgan’s daily living activities became massively limited. Today he is paralyzed all over his body and can only communicate with his environment through his eyes.
But Scott-Morgan brims with defiant optimism and will try whatever it takes to change that. When the disease broke out, Scott-Morgan sought advice from Dr. Who and Star Trek. “They taught me that if you’re smart enough, brave enough, and have access to technology, anything’s possible,” he says.
Scott-Morgan is convinced that paralysis is an engineering problem. And so he underwent several serious surgeries. A gastrostomy, colostomy, and a cystostomy give him more freedom in everyday life. He also had his human larynx removed so he wouldn't risk choking on his own saliva or not getting enough oxygen. However, this life-prolonging decision cost him his voice. So he set out to work with a global consortium of companies, technologists, and designers to create a synthetic version of his biological voice and a 3D-animated avatar of his face, to communicate with his environment.
The Scott-Morgan Foundation now works with companies like Intel, CereProc, DXC, and Lenovo alongside many individuals on better solutions for people living with extreme disabilities.
These include digital avatars, as well as self-driving wheelchairs, smart home technology, and exoskeletons. They also include backend technology such as operating systems, artificial intelligence, and sensor technology, which are needed to effectively and efficiently address patient needs.
Pushing the boundaries of what it means to be human
Under the most pressing and adverse circumstances, Scott-Morgan and his supporters are reinventing what's possible.
On a scale of 1 to 10 of how impressive and inspiring Scott-Morgan’s work is, we would have to offer an 11. His optimistic, irrepressible will to rewrite the future of what it means to be disabled demonstrates what has always made science and progress successful.
If you can, be sure to not only read the feature, but also watch the BBC4 documentary “Peter: The Human Cyborg,” which shares deep insight into the disease, and also conveys the hope that many things are possible.
“Bravery isn’t about not feeling scared—it’s feeling scared but going on regardless.”
The frontiers of medicine are not being pushed by people who are good at yelling platitudinous science fiction about the future on social media. Sure, excellent marketing helps to attract attention, funding, and public imagination. But real change is often initiated by those who know what it means to experience something that takes away your joy of living.
It's people like Scott-Morgan who make us think time and again about how important and meaningful techno-optimism can be. Scott-Morgan demonstrates incredible courage, optimism, wisdom, and determination in times of utmost personal tragedy. He shows what is possible when up-and-coming health and medical technology is used to solve real problems faced by people with disabilities.
He keeps going, against all odds. And that should be an example for all of us.