History of the living places of people with muscular dystrophy in JapanKumi Banno

Graduate School of Core Ethics and Frontier Sciences, Ritsumeikan University /Gifu University of Medical Science◆ Recent developments◆ Introduction
Progressive muscular dystrophy is a hereditary disease in which the degeneration and necrosis ofskeletal muscles and decline in muscle strength develop chronically and progressively. Symptoms
usually emerge in early childhood and gradually progress. Most people with muscular dystrophy inJapan enter national sanatoria and spend a long time with these institutions as their living place.
This report provides a summary of the history of these living places of people with muscular
dystrophy in Japan.

◆ Changes in living places 1940s～1970s
Throughout Japan there are military and medical group hospitals that continued to operate as“national sanitoria” after World War II. Before the war most patients entered these hospitals
primarily in order to be quarantined with tuberculosis. After the war ended (in 1945), however, thenumber of tuberculosis patients rapidly declined following the introduction of streptomycin (ananti-tuberculosis medication), and from 1951 the number of empty beds increased. Around thesame time, calls for an increase in support for the parents and family members of people withmuscular dystrophy whose symptoms become more severe year by year. Eventually these calls
reached the ears of politicians, and in 1964 it was decided to change the use of these facilities tonational sanitoria in order to fulfil the obligation of the state to protect these children and theirfamilies, and patients with muscular dystrophy began to be admitted in response to this new
demand for medical care. Patients and their families had an urgent need for an understanding of
the cause of this disease and the development of effective treatments, and specialists in neurology,orthopedics, and pediatrics were deployed in response. Money was appropriated for researchfunding, and patients received reductions in their medical fees in exchange for cooperating inresearch. There were places of learning called “bed schools” where teachers came to educate
bedridden children, and unlike in their previous isolated living circumstances these children were
now able to make friends. These were advanced and integrated approaches the likes of which were
not seen in society.

2006
Services and Supports for Persons withDisabilities Act

2008年
2011
Services and Supports for Persons withDisabilities Act

2013
Comprehensive Services and Supports forPersons with Disabilities Act

2016
Discrimination
Elimination Act

Local living support
projects
Severe disability home
visit nursing careprojects

2018, Dec.
33 rd International Year of Disabled Persons
Ongoing Symposium～The present and future of muscular
dystrophy wards and community living ～（Kyoto）

2018, Dec.
Film Screening
Banana? At This Time of Night?

◆ Changes in living places 1980s～2010s
Beginning in 1980, the introduction of mechanical ventilators increased life expectancy, allowing
people who had only lived to be twenty in the past to live into their forties and making their
hospitalization long term. Many years went by without an effective method of treatment being
established. In 1981 the establishment of residences with care provided, centered mainly on
patients heavily influenced by the International Year of Disabled Persons movement in America,
began to spread around the country. Around that time a book by a person with muscular dystrophy
was published. From 1995 use of the Internet became widespread, and with government assistancethe use of computers became possible even within national sanatoria. A national support system,
the Services and Supports for People with Disabilities Act and the Comprehensive Services andSupports for People with Disabilities Act were put in place in 2003, 2006, and 2013 respectively, andlocal living support projects and severe disability home visit nursing care projects were carried out.
The transition to living in local communities, however, did not proceed smoothly.

2019, June
What is independent living with muscular
dystrophy？
– From a muscular dystrophy ward toindependent living (Hyogo Prefecture)◆ Why was moving into local communities difficult?
1. Even though people learned about moving into the community through the Internet, it was still necessary to understand methods ofmaking use of the system and there was still a need for offices in communities.
2. If helpers were not present, people with muscular dystrophy had to recruit assistants and manage those they selected themselves.
3. There was economic disparity between local communities, and particularly in the first such case in each community it was important
to work with a lawyer when negotiating with the government.
4. Given the characteristics of the disease it was important not to get cut off from “medical care,” and it was necessary to train helpers
capable of performing suction.
5. These people had been institutionalized as children with the consent of their guardians, and to move back into the community theyrequired the consent of their parents or primary physician.

◆ Summary
The “self-determination” of people with muscular dystrophy moving out into the local community was both an “adventure” and“independence involving risk,” and was fraught with “self-responsibility.” In order for people with muscular dystrophy to realize atransition to living in their local communities they had to maintain good relations with their medical care providers, in some cases
while confronting opposition from their parents, put their faith in and entrust themselves to other support providers, and move
forward while making their own enormous mental and physical efforts. Recently, however, through people with muscular dystrophy,
who in the past would not have even considered leaving the national sanitoria, speaking out on social media and at symposia alongwith their supporters, people in society at large are starting to become aware of these closed-off living conditions that had gone largely
unknown.
Going forward, there is a need to create social systems that will allow the process of people with muscular dystrophy moving into local
communities to go smoothly and enable them to live rich and secure lives once this transition is complete.
＜References＞
・Tateiwa, S. (2018) Byōsha shogaisha no sengō: Seiseijishitenbyō [People with illnesses and disabilities in the postwar period: A rough history of the politics of life], Seidosha
・Asaka, J., Okahara, M., Onaka, F., and Tateiwa, S. (1995) Sei no gihō: Ie to chisetsu wo dete kurasu shōgaisha no shakaigaku [Ars vivendi: Sociology of disabled people who have left home orinstitutions], Fujiwara-Shoten
・Shōgaisha Fukushi Kenkyūkai (2019), Chikujyō kaisetsu shōgaisha sōgōshienhō dai 2 ban [Breaking down the Comprehensive Services and Supports for People with Disabilities Act article by article
2nd edition], Chuōhōki Shuppan K.K.
※ This research received funding from the Gunkai Foundation