Experiences and Narratives of People with Locked-in Syndrome.

In 2020, a year full of chaos caused by the spread of COVID-19, Ritsumeikan University launched “Society-with-Coronavirus Research Program – Visionaries for the New Normal -”　to look at society after the COVID-19 pandemic. Twenty-one topics were selected from among eighty-one proposals from a wide range of fields within the university (http://www.ritsumei.ac.jp/research/member/corona/) and research on each of these topics began in September of that year. Here I will introduce some of the research related to one of the selected topics, “Sustainable Care in a Society with COVID-19” (project leader: Mima Tatsuya, Professor in the Graduate School of Core Ethics and Frontier Sciences).

From February 3rd to March 7th of 2021, our research group conducted an online survey on the experiences of people with a condition called “Locked-in Syndrome (LIS).” LIS refers to people who have severe quadriplegia and communication disabilities but retain unaffected cognitive function. In some cases LIS is caused by something that has happened in the brain, while in others it is the result of a motor neuron disease such as amyotrophic lateral sclerosis (ALS) or Guillain-Barre syndrome. For this online survey, we disseminated a link through social media such as ALS groups on Facebook and put out a broad call for participants who recognize themselves as having these sorts of symptoms. To enable the smooth participation of people with LIS who operate a computer or tablet with line-of-sight input or a piezo switch, the page set up for the survey on the Institute of Ars Vivendi’s website (see Image 1) was designed to allow for everything from the giving of consent to the submission of answers to be done with one click (apart from entering names and addresses). In the survey, in addition to questions about the everyday experiences of people with LIS, in light of the spread of COVID-19 we also asked how this everyday life was being affected by the pandemic. We received responses from eighteen people with LIS and presented some of our results at a workshop entitled “Locked-in State as Everyday Life: Interim Results of the Society-with-Coronavirus Program” on March 28th.

Image 2: Snapshots of workshop participants.

In her opening remarks at the start of the workshop, Ritsumeikan University Vice President and Professor in the Graduate School of Core Ethics and Frontier Sciences Matsubara Yoko introduced the research group for technology for living with ALS she herself had established in 2007 and positioned this workshop within the broader context of Ars Vivendi studies. In the explanation of purpose that followed, I touched on the fact that in some Western countries the rate of use of mechanical ventilation with tracheostomy by ALS patients is very low, and ALS patients do not live very long. In his introduction to LIS, Professor Mima Tatsuya presented contrasting data showing that while 70% of survey respondents who were unable to move their limbs but could communicate using their eyes (LIS) answered that they were happy when surveyed, 56% of healthy medical students and healthcare providers answered that they would prefer to die if they were going to have long-term LIS. This calls into question whether living on a mechanical ventilator with LIS is truly worse than dying. In this workshop we sought to deepen understanding of this issue while presenting the narratives of their own experiences people who are actually living with LIS painstakingly spelled out letter-by-letter in response to our survey. As can be seen in Image 2, the workshop featured real-time interaction between people with and without LIS using a variety of digital and analog communication methods. In addition to those who appear in Image 2, this workshop would not have been possible without the assistance of various other individuals and organizations, including NPO Uni, who provided live captioning, Spica, who provided simultaneous English to Japanese interpretation, Robert Chapeskie, who provided Japanese to English interpretation, and KYOTOGRAPHIE who set up the ZOOM webinar from multiple locations including the sites of overseas participants and the interpretation booth. I don’t have nearly enough space to give a full account of the content of the workshop here, but I believe that more people learning about the diverse experiences of people with LIS will make the path toward an inclusive society clearer. For more information please see the video of the workshop available on YouTube (https://youtu.be/CbpxsmLAKGg).

Himeno Yukiko
(Assistant Professor, Department of Bioinformatics, College of Life Sciences, Ritsumeikan University/Member of the Steering Committee of the Institute of Ars Vivendi, Ritsumeikan University)