Hiroyuki Takao
Division of Innovation for Medical Information Technology, Research Center for Medical
Sciences, The Jikei University School of Medicine

Introduction and the onset of my disease

I worked as a doctor in the Department of Neurosurgery at the Jikei School of Medicine since 2001. I am now working on digital medicine and accessibility in the Division of Innovation for Medical Information Technology.
Four and a half years ago (in August 2018), I was suddenly struck down by illness. I was unconscious for four months, and when I awoke, I was paralyzed in all my limbs: I could only move my eyes, and a ventilator and other tubes were attached all over my body. The name of my condition was severe Guillain-Barré syndrome.
Ordinary diseases get progressively worse, and so patients are unable to tell us about their situation at that stage. With Guillain-Barré syndrome, the disease is worst at the beginning, and progressively gets better. Usually, it is very difficult to express your own situation once it has got worse, but because I have gradually got better from the worst stage, I am able to talk about what it was like at that time.
After four and a half years, the tubes have been removed from my body, I am able to eat via my mouth, and I can speak in my own voice once again, albeit differently from before. The degree of paralysis in my limbs has somewhat improved; although I can bend my elbows, I still cannot move my fingers at will. It will probably take a bit more time.
I have come into contact with accessibility, and the inconveniences in my everyday life are being resolved. If you cannot move your body, an alternative method is to use your voice; and even if you can only move a little, you can use a switch to operate an iPad, and with that you can listen to music, control a television, or send a message. Nowadays, you can operate household electronics by talking to a smart speaker, allowing you to change television channels, open and close curtains, and control the air conditioning from your bed, so I think that the burden on family members has lessened.
iPads are equipped with accessibility functions as a standard feature. I have written a book introducing how to use these. Please read it as an opportunity to learn about accessibility and about how to resolve inconveniences.

The hardest thing

The hardest thing after contracting this disease was that communication became difficult. I was paralyzed in all four limbs and on a ventilator, so I was unable to communicate at all. I am sure that the people around me must have wondered whether I, who could not move my body or talk, would be able to communicate, or indeed whether I was able to understand.
Before using accessibility devices, I communicated via a letter board. It was difficult for me to move my eyes, so I had someone point to the letters with their finger, and I communicated by signalling when they reached the right one. This is an extremely frustrating method. I was on a ventilator, so I could not nod my head, and instead turned it to the side as a signal, but people sometimes thought that I was displeased. There were also frustrating occasions when people did not write down the letters which I had chosen and forgot them, so we had to start again from the beginning. It was also difficult for me to turn my head at just the right time. People pointed to the letters on the board at different speeds and in different orders, which caused further problems. Some people worked on the task carefully, while others soon gave up.
There are some people who say “We’d manage somehow if we could just understand ‘Yes’ and ‘No’”, but if you have no idea what the other person wants to talk about, without great skill in how you ask questions it is very difficult to reach the answer and understand something like “My righthand buttock hurts” from someone who can only answer ‘Yes’ or ‘No’. It is a frustrating exchange, but there is no other way, so this exchange is, so to speak, your only hope. Nevertheless, if the other person gives up before you do, saying “This is really difficult…”, that hope changes to despair.

Towards the realization of a digital society

In the Priority Plan towards a Digital Society, published on 24 December 2021, the government announced the aim of bringing about a digital society in which no-one is left behind.
Phrases such as “the utmost consideration for accessibility”, “provision which is attentive to details”, “responding not just to single disabilities but also to multiple disabilities, keeping in mind severe and overlapping disabilities”, “securing universality, rather than a silo situation” appeared in this plan. It gives me the sense that the realization of a digital society and consideration for accessibility are truly being integrated and taken forward together.
Simply hearing the word “digital” may put some people on the defensive because they feel insecure in this area. However, digitalization is essential given the way in which the times are changing. Of course, we must not forget that humans are analogue, but we need to assume that we will lead our everyday lives from now on in a digital society
If the things which we are using everyday are convenient, and we know that there are a variety of ways of using them, we will also be able to go on leading our usual lives without panicking in times of crisis.
Learning how to use new devices after you become physically disabled is hard. It would surely be preferable if you could still use the things which you had been using on a daily basis even after becoming disabled. When it comes to communication support or control of our environments, in particular, we are moving from an era of the specialist welfare equipment which we have seen so far to a way of thinking in which we seek to adapt general-purpose items.

For the realization of a society in which no-one is left behind

If your values do not include the idea of accessibility, people’s various disabilities are “inconvenient and unfortunate”. At first glance, these two words seem as though they might be inseparable and correct. However, from my own experiences after becoming ill, this is by no means true. If both the person concerned and those around him or her make the arbitrary assumption that inconveniences are impossible to resolve, and give up, or make the person give up, this is what creates misfortune.
In actual fact, there are people who do not suffer any great inconvenience even though they cannot see, and other people who sense inconvenience even though they can see. The foundation of accessibility is for everyone, irrespective of whether they are disabled or able-bodied, to think about ways to manage inconveniences rather than turning them into misfortune.
For the realization of a society in which no-one is left behind, it is first of all important to know about the idea of accessibility. Accessibility is something that exists to support not only disabled people but also their supporters, as well as elderly people, those who are unused to digitalization, and anyone else who is struggling.
Accessibility is not something which should be thought about through the lens of “for disabled people” or “for elderly people”. It is something for us all to think about together so that we can each lead better lives. As can be seen from the existence of the national Digitalization Promotion Committee members, accessibility is not a question of those who support and those who are supported, or those who teach and those who are taught. Rather, I believe that the process of thinking together is itself an important form of accessibility.

Edited and published by the Japanese Society for Rehabilitation of Persons with Disabilities. Published on June 25th, 2023.