Paul Trossèl is a husband, father, author, and entrepreneur. His life is full and meaningful by almost any estimation, but he was not always seen that way. More than 12 years ago, Trossèl suffered a brain stem stroke that dramatically altered his day-to-day life. Since the stroke, he has been paralyzed and unable to speak, a condition described as locked-in syndrome in which a person has full cognitive function but is largely unable to communicate or voluntarily move.
At his powerful TED Talk, assisted by his friend, scientist Dr. Femke Nijboer, he delivered a message of hope and a request from his audience: to recognize the abilities of people with disabilities and seek to include them in society.
Nijboer and Trossèl met after the stroke that so dramatically altered Trossèl’s life. Nijboer, an award-winning scientist, had spent years studying people with locked-in syndrome and using computer technology to create devices for enhanced communication.
Through her friendship with Trossèl and many of the other people with locked-in syndrome with whom she worked, Nijboer realized that bridging the communication gap was only one piece of the puzzle.
Patients with locked-in syndrome are sometimes characterized as being in a “vegetative state,” a derogatory term suggesting that people in such a condition are less than human or incapable of human cognition. This idea is simply not factual. Studies suggest that at least 20 percent of patients in a so-called “vegetative state” are fully cognizant but unable to speak or move.
For patients who have temporarily experienced such a condition and recovered, the inability to communicate was frightening and disturbing. One woman described her harrowing experience saying, “I found myself suddenly locked into agonising immobility, with my whole body paralysed except for my right eyelid.” After months of recovery and rehabilitation, the woman was able to regain speech and many physical abilities.
For the patients who may never recover from locked-in syndrome, finding alternative means of communicating with the people around them is transformative. Like Trossèl, many patients are able to move their eyes and find a way of indicating ‘yes’ or ‘no.’ For additional communication, scientists have developed brain-computer interfaces.
However, as Nijboer and Trossèl learned, helping people with locked-in syndrome communicate did not solve the biggest obstacle to interacting with the people around them. The last study Nijboer conducted with people with locked-in syndrome did not involve specific technology. As she told the audience, “Instead, I took a step back and I asked, ‘Do you think you even need a brain-computer interface? Do you feel included in society? Do you feel that you belong?’” The answers were so convicting that Nijboer reconsidered her work and decided to give up creating brain-computer interfaces in order to pursue activism on behalf of people with disabilities.
The people with locked-in syndrome with whom Nijboer worked and, as with Trossèl, became friends, were able to communicate far beyond what the people around them were willing to accept. Nijboer explained, “Contrary to what many healthy people think, people with locked-in syndrome have a good ‘quality of life’; they think their life is worth living.”
She said, “After Paul accepted that he could not further rehabilitate, he reinvented himself as a husband, as a father, as a man in a wheelchair who cannot speak.” Although unable to manage 1,000 employees as he had before the stroke, Trossèl was still able to write a book, start a company, and advance far beyond what doctors initially predicted. This, Nijboer says, is not unique but quite common for people with locked-in syndrome.
Yet, in almost every case, like Trossèl, patients had to fight to gain access to rehabilitation and continue to fight daily for inclusion. The Dutch healthcare system refused to fund Trossèl’s rehabilitation, and he had to seek private funding in another country. Disturbingly, because euthanasia is legal in the Netherlands, doctors offered to kill Trossèl, though they did not even ask him but instead asked his wife if he wanted to die. Trossèl’s answer, like so many people with locked-in syndrome, was emphatic: he wanted to live.
Nijboer aptly stated, “Paul is living proof that life can be worth living with locked-in syndrome.” She noted that what Trossèl and others with the condition suffer is not “locked-in” syndrome but “locked-out” syndrome: being seen only for their disabilities and not as fully human, capable of living life fully and meaningfully.
Trossèl, who among his many other accomplishments became the first TED Talk speaker who cannot speak, left the audience with a challenge to find a way to increase inclusion for people with disabilities wherever they are. What can you do to ensure that our society recognizes the sanctity of human Life in all people?