1.

Hello everyone. I’m Yukiko Himeno from Sakura International, Japan. It is my great
pleasure to give a talk in this session as a representative of our research team. Today, I
would like to present our study on the experience of persons with locked-in syndrome.

2. Our research team consists of 3 major institutions. Sakura International is a peer support
organization offering home care service for people with intractable disease such as ALSin Japan. Dr. Yumiko Kawaguchi is the present vice chairman of the organization andreceived her Ph.D degree from Ritsumeikan University in 2013. Prof. Tatsuya Mima, aMedical Sociologist, was a vice chair in her dissertation committee. I, Yukiko Himeno,
am a physiologist collaborating with them and other young researchers at Ritsumeikan
University. Prof. Mima and I visited Rovira i Virgili University (URV), in Tarragona,
Spain in 2019 where Prof. Fernando Vidal and Dr. Lina Masana work. Prof. Vidal is theprincipal researcher for the research project “Anthropology and Phenomenology of theLocked-in Syndrome.” We all collaborate in the framework of this project.
3.

The aim of this study is to understand the experience of persons with locked-in syndrome,
whom we call PwLIS, to understand their "happiness" in a qualitative way. The
uniqueness of our study is the approach taken from the academic side and theinvolvement of people living with the disease. We investigate the individual and social
impact of LIS, as well as the needs and expectations of PwLIS.

We study theirexperience on the basis of what they tell us about it, as well as their comments andstatements. Learning more about PwLIS will help us to figure out the social and cultural
structure that underlies the living experience of PwLIS and identify aspects that might
have been overlooked in the care of PwLIS, to make recommendations for professional
caregivers and service providers, and to raise public awareness.
4.

In February and March, this year, we conducted a survey on the PwLIS. We prepared awebpage and sent out a link to this webpage on Facebook in groups with many members
who have ALS. Lina and Fernando, who conduct the research in Europe, carried out thesurvey using the same questionnaire in France and Spain. They prepared a short greeting
video message to welcome volunteers to the survey.

5.

In the survey, the respondents used various kinds of communication tools. 72.2% used
line-of sight input to manipulate their computers, tablets or smartphones, like the French
DJ who created music using eye navigation technology for the closing ceremony of theTokyo Paralympics this year. 61.1% used lip reading, like Jean Dominique Bauby in the1film, The diving bell and the butterfly. 55.6% used a transparent alphabet board written
in Japanese, and others included means like Dr. Tenbata moving his trunk tocommunicate.
6.

In Japan, the term “LIS, locked-in syndrome”, is not so familiar, especially to PwLIS frommotor neuron disease such as ALS. Indeed, a half of the respondents answered “No” tothe question “do you think your physical condition is LIS?” although they all met theclinical criteria for LIS. Then, we asked what they thought about “LIS” having become
the official medical term. A significant proportion 80 % of the respondents who knew theterm “LIS” but did not think it applied to their own physical condition expressedmisgivings and criticized the term, saying, for example:“It is laziness, ignorance and arrogance on the part of healthcare professionals.”“Ithink it's inappropriate. I think being locked-in means there are physical and mental
problems, but what is it that is being referred to as being locked-in?” “ It is adangerous expression that can lead to the negative misconception that all ALS patientsend up with LIS.” “If the people around me can respond to something coming frommy body that isn't language, I will not be locked-in.”These responses showed that respondents with ALS who did not think their own physicalcondition was LIS made a point of distinguishing their own condition from LIS on thebasis of the assertion that they were not actually “locked in.” In their view, being “lockedin” would not occur as long as healthcare professionals and the people around them
responded properly.

7.

On 28th March this year, we held an International On-line Workshop titled “Locked-instate as everyday life.” In this workshop, we gave talks about the outcomes of the survey,
which will be published in the near future; PwLIS also made presentations andcommented on our research.

8.

Mr. Takano prepared his PowerPoint slides with synthesized voice and manipulated hiscomputer by his line-sight input computer. He made a presentation based on hisparticipation in the study; he answered “Yes” to the question “do you know the name
LIS?,” answered “No” to the question “do you think that your physical condition is LIS?,”and raised the crucial question “am I locked-in?”9.

Mr. Onda sent a copy of his comment to us beforehand to read instead in the session, but
he participated in the online session on live; the caregiver said “excuse me, but Mr. Onda
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wants to use lip reading. Shall I go ahead?” These two PwLIS were the invited speakers
in the roundtable session.
10. Mr. Okabe also prepared a manuscript beforehand to make a comment in the roundtablesession to emphasize the importance of communication for PwLIS. His caregiver read
aloud on behalf of him in the discussion.
11. In the roundtable discussion, there were three non-disabled people from academic andactivists in addition to the two LIS invited speakers. In that connection, we can make thefollowing observations:•In terms of using Information and Communication Technology, no special
consideration was necessary for the PwLIS.

•On the other hand, it was necessary to secure a certain amount of time for thereal-time voice remarks of PwLIS, such as the helper’s lip-reading using thespoken letters or the alphabet board, the line-of-sight input, and the switch
operation.

•However, in situations where strict real-time performance was not required andthe time table was adequate, it was possible to proceed smoothly, and onlinesocial participation of PwLIS seems to have been realized.

•Unexpectedly, inclusion of PwLIS in the society seems to have been partiallyfurthered as the result of avoiding 3Cs (Crowded places, Close contact, Confinedspaces) in the era of the COVID-19 pandemic.

"Working from home has become commonplace and it helps me a lot"
"I realized equality because I do not meet directly”
For further contents of the workshop, access our YouTube content from this code.
12. These are the take-home notes from my presentation.
•In Japan, the negative connotation of the words “locked-in,” partly at least due tothe fact that PwLIS can communicate, led these persons to reject or question themedical term “LIS”.

•Although the results reflect only information-rich PwLIS who can use social
network system as a communication tool on a daily basis, the results suggest thatPwLIS would be truly "locked-in" only if they were totally unable to communicate.

•Therefore, it may be beneficial to offer devices as public support to facilitatecommunication between PwLIS, their caregivers, and the larger socialenvironment.
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This is the short movie of Ms. Misao Hashimoto having communication through her
specialized caregiver. If you’re a PwLIS and interested in sharing your experience for therealization of an inclusive society, please join us. If you’re a researcher or healthcare
professional and interested in our quest to better understand the experience of PwLIS and theconditions for a happy life, please join us. Thank you very much for your attention.

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