RIGHTS-JAPAN: Little Help For the Disabled

By Suvendrini Kakuchi Reprint | | Print |

Suvendrini Kakuchi

TOKYO, Mar 2 1998 (IPS) - Kyoko Takahashi’s eldest son, Jun, is 26 years old but has yet to leave the family home or hold down a job. In fact, Kyoko has devoted most of her time to him since he was born.

She hasn’t had much choice: Jun has Down’s syndrome, which has left him with the mental abilities of a seven-year-old. He also has a disabled left hand that has made it unusable.

In other developed countries, the Takahashis may have had help from the state, but aid for the likes of them here has been slow in coming.

“The battle to get better support for the handicapped is an uphill struggle in Japan, where the government is more interested in the economy rather than investing in better care for people,” says Nobuyushi Suzuki, spokesperson for the Japanese Association for People with Intellectual Disabilities that represents at least 430,000 people.

Indeed, activists say while Japan is the world’s second richest country, its welfare system lags behind those of most developed nations.

Japan’s old supportive family traditions managed to make up for such lapses in the past. But now that much of these have broken down as a result of modernisation, the lives of the disabled — and that of their families — have become harder.

Last year, much of Japan was in shock after the media reported the story of a 65-year-old mother who had a fatal heart attack while bathing her 36-year-old son, who had cerebral palsy. The son drowned as a result, but it was only two days after that both their bodies were discovered.

Bathing services for the disabled had not been included in the welfare programme of the city they lived in, and the mother had complained to neighbours she was exhausted from looking after her son.

Researchers say mothers often end up the sole caregivers of the disabled in Japan — Kyoko Takahashi is living proof of that.

She says of mothers in the same situation: “We are physically and mentally exhausted all the time. We are even afraid to die, because we worry about who is going to look after our disabled children once we are gone.”

The Japanese government has been trying to help those with disabilities and their families since 1996, the year it announced the ‘Gold Plan’ aimed at bringing the nation’s welfare system to a level in keeping with its status as a developed nation.

The seven-year plan has since been coupled with an 800 million dollar commitment toward ‘normalisation’, which emphasises the rights of the disabled to live lives similar to those of other people.

But for Hajime Okutani of the Japan Mentally Handicapped Association, this is not enough. Okutani says the government has to provide ‘welfare homes’ for the disabled if it is serious in pursuing normalisation — a concept first proposed in Denmark in the 1950s.

Activists and families of disabled people say more homes that enable four mentally disabled people to live together with one guide helper are needed in Japan. The families say the system is the best way for their disabled members to lead independent lives, but there are only 1,000 such homes in Japan at present.

Okutani says more than 340,000 mentally disabled people are in hospitals today. He adds that nearly a third of that number have actually been officially discharged, but are forced to languish — some for as long as 20 to 30 years — in hospitals because they have nowhere else to go.

The government has not been short on proposals to nurture independence among the disabled, including increasing the number of group homes. There have also been proposals for more sloping passageways and dedicated elevators for wheelchair users, more home care and training programmes.

But activists note that they have yet to see these plans become reality.

Still, many say a major step in the Gold Plan is about to be made, now that the Diet is poised to pass a new law requiring firms to employ more disabled people. The law, which the Japanese legislature is expected to act on in July, aims to have the disabled representing between 1.6 to 1.8 percent of employment statistics.

“The law is a landmark in our struggle,” says Suzuki. “For the first time, there is a legal means to get what we have fought for, for so long.”

Suzuki says the biggest barrier to an independent life for the disabled is the lack of finances. “Without jobs,” he says, “it is impossible for the disabled to take care of themselves.”

So far though, only 16 percent of his organisation’s members have found jobs. The Tokyo Metropolitan Teachers Union for the Handicapped, meanwhile, reports that out of the mentally challenged high school students who graduated last March, only 217 found employment, or 2.3 percent lower than 1996 figure.

It is uncertain whether state efforts for the disabled can still make a difference for Kyoko and Jun Takahashi. But Kyoko is thankful for whatever small blessings come her way.

“It was more difficult at the beginning because my husband was ashamed of Jun and looked at his son as a stigma,” she says. “But things have changed a lot, even though Jun is still my responsibility.”