When Tokyo Gov. Yuriko Koike in late April asked residents to grocery shop three times a week to limit unnecessary outings to curb the spread of coronavirus, Toshiya Kakiuchi, 31, who has dysosteogenesis, or defective bone formation, worried the measure would pose challenges to his daily routine. He has spent most of his life in a wheelchair.
The coronavirus outbreak in Japan is creating new hurdles for people with disabilities, adding to the already existing challenges in their everyday lives. These challenges make disabled people worry the pandemic will slow down Japan’s progress toward a barrier-free society. They hope the new reality will provide the impetus for new policies and initiatives that will address the impact of COVID-19 on people with disabilities.
“Limiting grocery shopping to every three days requires purchasing a specific amount of products, but for wheelchair users, visually impaired people or others unable to carry heavy loads due to disabilities, this would place limits on what one can buy,” said Kakiuchi, who heads consultancy firm Mirairo Inc. and serves as an adviser to 2020 Tokyo Paralympics organizers. “I feel that some measures introduced to curtail the outbreak (could adversely) affect the disabled community.”
Challenges vary depending on the type and level of one’s disability. But whether it’s a mobility impairment, hearing or vision loss, or a condition limiting one’s dexterity or stamina, people that are physically challenged worry about being cut off from medical care they may need in an emergency.
Naoya Inoue, 36, from Ome in western Tokyo, who nearly five years ago lost sight in both eyes due to retinal detachment, is staying home as much as he can knowing the virus may remain on surfaces such as handrails he needs to touch while outside.
“With everything, including maps, commuting routes and ticket prices displayed in Braille, we need to touch different surfaces to navigate our way through space, so I try to use long sleeves so as not to touch surfaces directly,” he said.
According to the Japan Federation of the Visually Impaired, a growing number of low-vision people and the blind are having difficulties with acquiring assistance from sighted attendants due to coronavirus fears.
In a statement issued on April 22, the group asked the health ministry to strengthen support for people with visual impairments, including financial aid for service providers.
Inoue worries that without helpers, people like himself could be left behind in an emergency. Inoue, who offers support for other visually impaired people by teaching them to make use of text-to-speech technology to read, write and send emails, said that even the health ministry’s websites contain coronavirus information in formats that do not allow conversion to plain text, which can be converted to speech.
This was also true of the national survey on social distancing measures as prevention against the spread of the virus, which was jointly sent out by the health ministry and Line Corp. through the latter’s messaging app, Inoue said.
For people with a hearing impairment, the situation looks more promising, as the pandemic prompted some broadcasters to add subtitles or introduce other solutions in their news reports on the coronavirus for people with hearing loss. During Koike’s message to the residents of Tokyo on April 15, the sign language interpreter who stood by the governor’s side wore a clear mask, enabling viewers to lip-read. The move, which responded to concerns voiced by many hearing-impaired people, gained praise nationwide.
A survey conducted by Mirairo, which provides services focused on accessibility and universal design, showed that hearing-impaired people in particular have faced communication difficulties when interacting with people wearing protective face masks, which hinder lip reading.
“When I do watch television, I always think that although it’s a good example for public officials to wear masks in press conferences, there’s no way I’m going to get the information I need if the subtitles are not turned on,” said American Frank Mondelli, a 27-year-old Ph.D. candidate at Stanford University who has been in Tokyo researching the history of media, technology and disabilities.
Mondelli, who was born deaf in his right ear and hearing impaired in his left, added that sign language interpreters are not always present in these scenarios.
The Japanese Federation of the Deaf has created a website with helpful resources, which for example detail the press conferences that have sign language interpreters and which do not.
In the case of Peggy Prosser, a deaf American woman from Tokyo who has lived in Japan since 1991, asthma puts her at higher risk of getting infected.
Advised to stay home during the pandemic and minimize outings, Prosser will need to see her doctor online when she runs out of asthma medication. But she considers herself lucky to be able to communicate with her Japanese doctor using written English and sign language while in Japan. The freelance tour guide and English teacher to deaf Japanese school children is familiar with both American and Japanese sign language systems. While borrowing from some other countries’ systems, Japanese Sign Language has many signs unique to Japan.
“But I’m worried that I may not be understood here (in Japan), as I mix some words using American sign language,” she said through a Japanese Sign Language interpreter.
For those who cannot communicate without an interpreter, The Nippon Foundation, a nonprofit group that provides various welfare services, also offers sign language interpretation.
Prosser lamented, however, that despite their growing availability, such services are often provided only for Japanese Sign Language users, posing a challenge for foreigners in Japan. She worries that deaf foreigners, a minority within a minority, may struggle finding medical care for coronavirus patients where they could communicate using their language and be understood.
Social distancing may save lives, but it can also be a reason why many people with mobility impairments are faced with the dilemma of whether to seek help or not.
Josh Grisdale, 39, from Tokyo, a quadriplegic with cerebral palsy, depends on human interaction.
“Every single day I’m in contact with a number of different people coming into my house, and it’s very very close contact. … Even if I transfer from my wheelchair to my bed or something like that, it’s sort of like we hug basically,” he said.
Grisdale, an information technology coordinator at a retirement home and creator of the website Accessible Japan, which provides information on accessibility to disabled visitors, moves around the city in his electric wheelchair. But he cannot transfer in and out of it without help from personal care attendants who come to his house every day.
Every morning, they bring his wheelchair close to his bed, pull his arm to help him get up, hold him for about 15 seconds as they help him sit in the wheelchair, wash his body, shave his beard, prepare his meals and help him get dressed. At the end of the day, they help him get into his bed. About 10 care attendants visit his house within one week.
Infectious disease experts advise people stay at least 1 meter apart, as droplets carrying coronavirus can travel several meters away. In close contact, Grisdale and his supporters risk getting infected by the coronavirus.
“What happens if I get COVID-19?” he asked. “If I have a fever, should I tell them or not? But if I don’t say anything, then I’d be responsible for that.”
The coronavirus outbreak has sparked concerns about the long-term effects on the daily routines of those with disabilities. For instance, limited outings may lead to struggles with managing one’s diet, malnutrition and problems with maintaining physical strength.
“As long as you’re in a wheelchair, you keep it up, but if you’re unable to leave home, you may find it difficult to stay fit,” especially without regular outpatient rehabilitation, said Kakiuchi.
While teleworking seems a promising solution in addressing unemployment issues faced by the disabled, it will require improving working conditions at home and ensuring better access to information using International Sign, a sign language used worldwide, he added.
“If the disabled are set to spend more time at home, such a transformation will require lifting architectural barriers and governmental assistance to create a better working environment at home,” Kakiuchi added.
“Over the past 10 years, Japan has made significant progress toward the inclusion of disabled people. But the drive toward inclusion has been based on the premise that people with disabilities like the elderly are active in society — if they’re not, they may be left behind. It would be unfortunate if this progress was halted.”