In order to understand the actual situation of discrimination and prejudice against Hansen's disease, the Ministry of Health, Labor and Welfare conducted an awareness survey among the general public for the first time.
More than 60% of people answered that they had no sense of discrimination against Hansen's disease, but nearly 20% said they felt uncomfortable touching their own bodies, and that they felt uncomfortable about touching their own bodies, as well as the families of former patients and their own families. More than 20% of respondents said they felt reluctant to get married.
A review committee of the Ministry of Health, Labor and Welfare concluded that ``prejudice and discrimination against Hansen's disease still exists, and the situation remains serious.''
(Reporter Chieko Katsumata, Social Affairs Department)
table of contents
Awareness survey on the actual state of discrimination and prejudice; responses from over 20,000 people from the general public
Isolation policy until 1996 Relief measures provided for former patients and their families
``I can't go back because I'm infected.'' Even if I recover, I'm rejected by my relatives and can't return home.
Even after he dies, he can't give his real name and lies in the charnel house of a sanatorium.
Discrimination in my family too, my sister's marriage deal falls apart
Many applications for compensation are abandoned.
Open table of contents
table of contents
table of contents
Awareness survey on the actual state of discrimination and prejudice; responses from over 20,000 people from the general public
Isolation policy until 1996 Relief measures provided for former patients and their families
``I can't go back because I'm infected.'' Even if I recover, I'm rejected by my relatives and can't return home.
Even after he dies, he can't give his real name and lies in the charnel house of a sanatorium.
Discrimination in my family too, my sister's marriage deal falls apart
Many applications for compensation are abandoned.
Awareness survey on the actual state of discrimination and prejudice; responses from over 20,000 people from the general public
Regarding Hansen's disease, former patients and their families have been subjected to discrimination due to the country's mistaken isolation policy, and last year, a review committee formed by former patients and human rights experts called for an understanding of the actual state of discrimination and prejudice. We have put together the report you are looking for.
In response to this, the Ministry of Health, Labor and Welfare conducted its first public awareness survey via the Internet in December last year, and received responses from more than 20,000 people.
In the survey, when asked whether they felt prejudice or discrimination regarding Hansen's disease,
▼35.4% said ``I think I have it'' and
▼64.6% said ``I don't think I have it.''
We also asked respondents about the situations in which they felt resistance towards former Hansen's disease patients and their families.
The percentage of people who felt resistance, which was a combination of "strongly feeling" and "slightly feeling," was
▼9.3% for ``living in the neighborhood,'' and
7.5% for ▼``going to the same medical institution/welfare facility.''
Additionally,
19.8% said ``Using the same bathhouse at a hotel, etc.,
'' 18.5% said ``Handling or other physical contact,'' and
▼ ``Your family gets married to the family of a former Hansen's disease patient.'' 21.8% of them answered that they felt resistance.
A review committee of the Ministry of Health, Labor and Welfare concluded that ``prejudice and discrimination against Hansen's disease still exists, and the situation remains serious.''
Isolation policy until 1996 Relief measures provided for former patients and their families
Hansen's disease is a chronic infectious disease caused by Mycobacterium leprae.
In today's Japan, where sanitary conditions are good, it is almost impossible to develop symptoms even if infected, but when there were no effective treatments, the disease progressed and left behind after-effects such as deformed limbs and face.
In order to prevent the spread of infection, the government enacted the Leprosy Prevention Act in 1952 and implemented a policy of isolating patients.
After that, it became known that the infection was extremely weak, and a treatment method was established, but the government continued the policy of forcibly isolating patients in sanatoriums until the law was repealed in 1996. It continued.
Former Hansen's disease patients filed lawsuits in various locations demanding compensation from the government, alleging that their human rights had been violated due to the country's erroneous isolation policy. The government continued to forcefully isolate patients even after the virus had disappeared, reinforcing discrimination and prejudice, and ordered the state to pay compensation.
In that year, the government and the Diet acknowledged the error of the isolation policy and apologized, and established a remedy that would provide compensation to former patients and their families if they applied.
Additionally, in 2019, a system was established in which the government pays compensation not only to patients but also to their families who have suffered from prejudice and discrimination.
The deadline to apply for compensation for your family is November 21st this year, which is just over half a year away.
``I can't go back because I'm infected.'' Even if I recover, I'm rejected by my relatives and can't return home.
A former patient of Hansen's disease told us about her own experience, explaining what kind of prejudice and discrimination against Hansen's disease still exists as described in the report.
An 87-year-old woman living in a sanatorium in Okayama Prefecture developed Hansen's disease when she was in her third year of junior high school and entered the sanatorium.
Among the former patients, many of them were refused home by their families who feared discrimination even after their illness was cured, but the woman said her brother told her, ``It's your home, so please come home.'' He said he would go back to his parents' home in Mie Prefecture, where his mother and older brother lived, about once a year.
However, about 10 years ago, when her mother passed away and her brother also needed nursing care, her brother's wife started refusing to let her return home.
The woman said, ``When I told her I was going to go home for a while, she said, ``Not at that time.'' She clearly said, ``I don't want to come back because I'll catch the disease.'' No matter how much I tried to explain that my illness was cured, it didn't work.'' We were talking.
After that, she continued to be unable to get through to her brother's phone calls, and she received a call in December of last year that her brother had passed away.
She was also refused permission to attend her brother's funeral, which means that she has not been able to visit her grave to this day.
brother of a former patient
Instead of visiting the grave, the woman displays an old photo of her mother and brother on her Buddhist altar in her room, and they hold hands together every day.
The woman said, ``He was like a father to me.Although we were only three years apart in age, he understood everything.I still feel like I want to see him, but if I don't give up, he won't have my feelings.'' I feel that the accurate knowledge of Hansen's disease is still not understood by the world.''
Even after he dies, he can't give his real name and lies in the charnel house of a sanatorium.
According to the Ministry of Health, Labor and Welfare, there are approximately 810 former patients like the woman still living in sanatoriums nationwide as of May last year.
Even after they die, many people do not go to their hometown graves, but rather go to the columbarium of a sanatorium.
Etsuko Sakate (53), a social worker who has worked for over 20 years at Oku Komyoen, a sanatorium for Hansen's disease patients in Okayama Prefecture, has been involved in the funerals and interment of residents.
More than half of the urns containing the remains of 1,797 people in the charnel house of the sanatorium have pseudonyms written on them.
Mr. Sakate said, ``Three people died at our nursery school this February, and one of them is sleeping in the charnel house under a pseudonym.The residents want to protect their families from discrimination related to Hansen's disease. She continued to use a pseudonym because she believed that she could end the discrimination against Hansen's disease by herself, and that all she had to do was put up with it.''
In addition, Sakate said, ``There are only a limited number of staff at the kindergarten who know my real name, and we also help hide my real name.When I suddenly come to my senses, I think it's really strange.'' People sometimes say that discrimination won't go away because we hide it from others, but I think we should not forget what is behind the situation where we are forced to hide it desperately. ” he said.
Discrimination in my family too, my sister's marriage deal falls apart
In the case of Hansen's disease, not only former patients but also their families have been subjected to discrimination.
Shinobu Hamamoto (pseudonym, 87 years old) from Hyogo Prefecture developed Hansen's disease when she was 11 years old.
She still lives under her pseudonym in a sanatorium in Okayama Prefecture.
Hamamoto's father was the first person in his family to contract Hansen's disease.
Regarding the time when her neighbors found out about her illness, Hamamoto said, ``I was told that the house over there was contagious and dirty, and I had white disinfectant powder poured over my head. "I was watching it when the boy I was playing with threw a rock at me and injured my head."
What Hamamoto will never forget is the discrimination against her sister, who is two years older than her, who encouraged her through letters and meetings.
When her sister was in her 20s, there was talk of marriage with a civil servant, but the deal fell through when she found out about Hamamoto's history of Hansen's disease.
Hamamoto said, ``The discrimination against her sister was the most painful thing she had ever experienced in her life.Because of my illness, I caused trouble for her sister as well.She thought she was going to die.'' ” he said.
Later, her sister married another man after telling him about her sister's leprosy, but some of her relatives still haven't been able to tell him about her sister's existence. It means that there is.
Regarding Hansen's disease, in 2019, the government established a system to pay compensation of up to 1.8 million yen, claiming that not only former patients but also their families suffered discrimination due to the incorrect isolation policy. .
Initially, the government expected that approximately 24,000 family members of former patients would be eligible for compensation, but as of mid-March, only 8,300 claims had been filed, which is only about 30% of what was expected. .
The deadline to apply for compensation is approaching November 21st this year, but Hamamoto's sister is afraid that if she receives a large amount of money, those around her will find out about her sister's medical history. It is said that they have not been able to apply for compensation.
Hamamoto said, ``My child's wife doesn't know about me at all, so I refrained from telling my sister about my existence.I've been discriminated against because of my Hansen's disease, so I don't want to be found out.'' If something happened to my sister and I had to grieve, it would be hard for me to live as well.''
Many applications for compensation are abandoned.
At Oku Komyoen, a sanatorium for Hansen's disease patients in Okayama Prefecture, where Mr. Hamamoto lives, social worker Etsuko Sakate (53) has witnessed many cases that did not lead to applications for compensation.
A major barrier to her application is that in many cases, her family members themselves hide the existence of former patients from those around them.
To apply for compensation, in addition to a copy of your family register, you will also need proof that you were admitted to a sanatorium, so the family will contact you at the sanatorium, but it is difficult to obtain a copy of your family register for the application. When they were asked why they were using it at a government office, there were cases in which they gave up on applying for reasons such as fearing that others would find out, or because they were hiding the fact that their family member had Hansen's disease from other family members. That's it.
Among them, she said, ``I can't afford to ruin the life I've cherished up to now for something like 1.8 million yen.''
Mr. Sakate said, ``Even if I want to file a claim, I am still in a situation where I can't because I'm afraid it will be revealed that I have a family member with Hansen's disease.'' The situation in which I have no choice but to hide it still continues. I think it's discrimination. I think it's deeply rooted."
He added, ``I think there is less visible discrimination against Hansen's disease in the world, but with the coronavirus, there are graffiti on infected people's houses, harassment of cars with out-of-prefecture license plates, and things like that. When I look at it, I think that the families of former Hansen's disease patients are still the same.I want people to realize that the fact that many people are unable to claim family compensation is a sign that society has not changed.'' talked.