MAKING THE ARGUMENT

FOR INTELLIGENT

EMPATHY AND

SMART FINANCE

 

In this first-person account marking the United Nations International Day of Persons with Disabilities on December 3, Yoshiko Miwa discusses the ongoing challenges she still faces on the job and explains what keeps her going.

 

The author with Ryu, now in recovery from uraemia.

 

by YOSHIKO MIWA

 

I lost the use of my limbs in 2005, becoming permanently bound to a wheelchair at the age of 42. The physical sense of loss was compounded by a similarly striking psychological sense of loss.

I felt I had no one to rely on. I have had a difficult and abusive relationship with my relatives, who have not only lacked empathy for my dis-ability but were also prejudiced against and felt so ashamed of my condition that they tried to confine me to a hidden facility.

Neither could I rely on work as a form of distraction. Once I lost my ability to walk, my writing offers began to dry up. At the time, I had numerous sources of income from semiconductor engineering and computer education work, as well as from freelance writing. These career setbacks came as a major financial blow.

Likewise, I could not rely on the government. In 2000, five years before I lost my ability to walk, the government tightened the criteria to qualify me for national welfare support amid budget cuts. Unlike before, when evidence of the symptoms of my disability had sufficed, I needed a proper diagnosis to providing clear justification for my disability certificate. How- ever, my doctors could find not find a clear cause for my degenerative disorder, which meant I did not have a diagnosis.

This has been a painful journey that has seen far more downs than ups. In the early days of my paralysis, I had to scramble to find ways to pay off my mounting bills, including a monthly 30,000 yen lease for my electric wheelchair. My only solace came from my three cats, who have been with me through thick and thin over the years, as well as disability rights activists who lent more than a listening ear.

 

Geneva Feb. 2016: The author just before periodic review for Japan of the UN’s 1979 CEDAW* Convention

 

Disability certificate

I finally got my disability certificate in 2007. A doctor found that my survival was not sustainable without it and made effort. By 2010, I had managed to obtain sufficient grants and disability pension income to scrape by. My own personal survival has hinged on learning the ropes and learning through personal experience about social welfare and disability issues in Japan.

But I refused to write about such matters because doing so, I thought, would mean admitting to defeat by my disability. But I changed my mind after the Great Eastern Japan earthquake, the tsunami and nuclear disaster of 2011, when I realized just how many people with disabilities were also barely surviving, out of sight and out of mind.

Life mission

I tracked news reports of the disaster closely, but for as long as three weeks after the tragedy I found no media reports about the fate of survivors with disabilities, among the countless stories of victims who were trying to pick up the pieces.

How could this be? I soon came to realize that persons with disabilities and their families would either have been turned away by shelters that were unable to accommodate them or had no choice but to live in their car or their partially-destroyed home.

This was not only due to a lack of infrastructure at shelters set up for able-bodied people. But worse than that is the gap in empathy, as survival instincts inevitably kick in when people have to fend for themselves. In disasters, sentiments that have long bubbled under the surface are blown up and amplified.

 

Sendai city Nov. 2011: Sidewalks remain damaged and hard to navigate 8 months after the March earthquake.

Difference and disability

There are many different forms of disability. The loss of full use of one’s limbs makes it difficult for me and anyone disabled to get around. But there are also psychiatric disorders, which cause sufferers to be shunned or seen as crazy if they disclose their condition. Those with intellectual or developmental disabilities, meanwhile, are discriminated against if they are seen as ‘causing trouble’.

My own disability made me feel personally invested in uncovering the important stories among others like myself that the mainstream media seemed to be uninterested in. My journey towards writing about disability issues began in May 2011 when I visited the coastal town of Urakawa in Hokkaido.

There, I learnt about its tsunami counter-measures, which were borne out of the fears of a person with a severe psychiatric disorder, afraid that a tsunami would strike someday and wipe out her town. Rather than rubbishing this as irrational clairvoyance, other residents in the community instead worked with her in a project to make the town more tsunami-resilient. The decision paid off, when a 2.8-meter high tsunami struck the town in March 2011.

As a person with a disability myself, I can personally relate to the challenges faced by other people like me. It is clearly my life mission to tell these stories.

Financial struggles

In 2012, I began contributing a weekly series to the online news site Diamond Online, discuss- ing the issues surrounding welfare payments in Japan. The series is ongoing.

Two years later, I began a doctoral study about public policy-making on welfare payments in Japan. I hoped to present the real value of social welfare such that the benefits can be felt by society-at-large, and not just directly by the recipients.

I have sought to do on-site reporting as far as I can, as this allows me to directly observe what people think. This despite the additional time cost and inconvenience of getting around, and the fact that, as a freelancer, I sometimes have to dip into my own savings.

The Japanese government has, since 2000, enacted policies dubbed ‘From Welfare To Work’ designed to enable people with disabilities to work so as to financially support themselves. But I do not think these have been very effective, nor do freelancers like myself stand to benefit.

A 2016 survey by Kyosaren, which organizes workshops for the disabled, showed that more than 80 percent of people with disabilities rely on an income that puts them below the relative poverty line. This ‘income’ does not solely comprise salaries, but also additional government grants such as welfare payments and disability pensions.

Recipients of public assistance are more than five times more likely to be disabled than able-bodied people in Japan. Clearly, not many disabled people in Japan are earning enough to support themselves; those who manage to do so are few and far between.

This relative poverty means it is very difficult to have a social life, still less to aspire to a healthy, sporty lifestyle. Even as Japan is set to host the Paralympic Games next year, many of my peers do not see the value in these Games but instead see the event as an ironic symbol of ‘ableism’ and a reminder of the huge gap between ‘haves’ and the ‘have nots’ in the dis-abled community.

Resolving these challenges will be a long and arduous journey, a journey made even more complicated by the Covid-19 pandemic, which presents perhaps the greatest hurdle we have to overcome.

Pandemic fears

The crisis is obviously difficult for everyone, but people with disabilities will also feel the impact very acutely. Job cuts will very likely hurt those with disabilities even more than the able-bodied.

To make matters worse, people with disabilities are more likely to have to fend for themselves, given the acute labor shortage among care workers. In 2019, there were 17 job offers for each applicant – a figure that is likely to have risen this year. With the crisis, many caregivers or medical workers have been redeployed to battle the coronavirus, thus affecting the quality of care provided to persons with disabilities. Being more vulnerable given our pre-existing conditions, there are also underlying fears of infection of disabled people by nurses exposed to the coronavirus at hospitals.

Financially, it is almost for sure that per-sons with disabilities will take much longer to recover than able-bodied people. To begin with, we have fewer resources to cope. The odds are stacked against us in ordinary times: we have always had lower incomes, been given insufficient public support and faced social and physical barriers. The pandemic has hugely compounded our difficulties.

There is no magic bullet to fix all these challenges, but I can only hope that throwing a more powerful spotlight on diversity issues in society – including at the FCCJ – will bring about greater awareness and empathy from society at large, encouraging people to lend a helping hand when they can, while also treating us as equals in the job market. As a journalist, I am determined to do all that I can to be a force for change through my work.

● FCCJ Professional/Journalist Associate Member Yoshiko Miwa is a wheelchair-bound freelance journalist specializing in science, technology, and social welfare issues. She is a regular contributor to the online diversity news site Diamond Online. She is also a member of the Board of the Japanese Association of Science and Technology Journalists (JASTJ).