DISABLED PERSONS DAY-JAPAN: Fight to Get Thumbs Up for Down Syndrome

By Suvendrini Kakuchi Reprint | | Print |

Suvendrini Kakuchi

TOKYO, Dec 2 2004 (IPS) - Kyoko Mita, 52, has never recovered from the shock she suffered when her newborn son tested positive for Down syndrome 23 years ago.

Kyoko Mita, 52, has never recovered from the shock she suffered when her newborn son tested positive for Down syndrome 23 years ago.

”Life has never been the same despite the later birth of two ‘normal’ children. I now look at my son and worry so much about his future,” Mita told IPS on the eve of the International Day of Disabled Persons which falls on Dec. 3.

Mita’s son, Yosuke, lives at home and works at a small factory where he packs hundreds of disposable wooden chopsticks into paper folders each day sitting by a conveyor belt in a room without windows.

He is paid 800 yen (eight U.S. dollars) an hour and has been on that salary for the past six years – a pittance compared to what Yosuke’s sister earns working in a bank. But according to Mita, at least it’s a job that he can hold on to.

Nobody, she said, would want to employ a person with intellectual disabilities.

Last month, the parents of a five-year-old boy with Down syndrome decided to sue for fair compensation, after their son died in July 2001 from a fatal ‘E.coli’ bacteria infection that he contracted from a city-run daycare center in Ikoma, Nara prefecture, west of Tokyo.

In trying to seek compensation from the Nara prefecture government, the parents – who do not want to make themselves public – were told by the Ikoma city authorities that their son, ”compared to children without disabilities, was worthless to society.”

Incensed by the insult, the parents, now, through their lawyer Takashi Kato have decided to take their case to court and are seeking damages in the sum of 450,000 U.S. dollars from the prefectural government and the city for neglect. The figure includes 320,000 dollars in lost wages based on the boy’s potential earnings, if he was alive, from the age of 18 to 67.

”We are unable to bear the fact that our son is still discriminated even in death. That is why we are taking the case to court. If we win we hope to give hope to (the parents of) other children who suffer from Down syndrome,” the parents said in a statement.

Their lawyer, Kato, explained: ”The case is an important landmark in the protection of the rights of the intellectually disabled. We are fighting to prove that children with Down syndrome also carry enormous potential to contribute to the betterment of society.”

There are 3.24 million intellectually disabled people over the age of 18 in Japan, according to Health and Welfare Ministry. Out of this figure, 60,000 are with Down syndrome. Nonetheless, there are no figures available for disabled people in employment. Each year, approximately one in every 800 to 1,000 babies is born with Down syndrome, a condition that may delay a child’s physical and mental development.

Down syndrome is a chromosomal disorder that occurs when an extra chromosome -chromosome 21 – is present in either the sperm or the egg at conception. There is no standard profile of a person with Down syndrome and not all people who have the disorder have severe mental retardation. Most people with the disability have mild to moderate mental impairments and are able to live productive and satisfying lives in their communities.

But the parents of the five-year-old boy could be in for a long drawn-out battle with the courts.

Authorities in Nara prefecture are fighting back, countering that the dead boy only had a mental age of three and could not have lived till 67 – pointing out that children with Down syndrome had reduced life spans. The Ikoma city government also supports this argument.

Kato, however, told IPS the lawsuit is being bitterly fought by both sides and emphasised that the case would set a precedent for the intellectually disabled in Japan with regard to the award of damages. The courts, he said, often halved the compensation awarded to disabled people in comparison to damages obtained by Japanese without disabilities.

”Lawsuits are the only way to set a precedent and pave reform,” explained Kato.

For the lawyer, there are two ways at looking at the issue.

”Firstly, it was progress when a child with Down syndrome was accepted into a regular daycare center for ‘normal’ Japanese children,” pointed out Kato.

”But when it comes to seeking compensation, the child is discriminated against,” he said, trying to explain the contradictions.

Nonetheless, there has been a successful court decision that offers a glimmer of hope to advocates of children with Down syndrome seeking legal redress.

In December 2003 the Hachioji District Court, in a suburb of Tokyo, ruled that the estimated income of a 42-year-old man with intellectual disabilities was 70 percent that of a person without such impairments.

In the meantime, human rights advocates are pressuring the government to sign an upcoming United Nations Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities, set for September 2005, and now being discussed by an ad hoc committee of which Japan is a member.

Shoji Nakanishi, head of the Japan Disability Center, said the U.N. convention offered great hope to the disabled in Japan who need better support systems against the rapid social changes that are happening in the country.

He said there is increasing pressure on disabled Japanese that they need to lead independent lives rather than expect their families to take care of them forever.

”Japan lacks support for the disabled to get better access to public transport, homes and services to enable them to lead independent lives. The treaty would force the government to improve the situation,” he pointed out.