"WORKING QUADS" HomePage
The Presentation for the Rehabilitation International 18th World Congress
INTELLECTUAL WORKING OF THE QUADRIPLEGICS MAKING GOOD USE OF TECHNOLOGY
WHO NEED ATTENDANT SERVICES IN JAPAN
/ by Kazuo Seike,
2000 and Beyond, Rehabilitation International 18th World Congress
Congress Programme
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DATE : WEDNESDAY, 18 SEPTEMBER
SESSION NO & : 87 - WORLD AT WORK
TITLE : INNOVATIONS IN REHABILITATION AND RETURN TO WORK:
WHAT WORKS AND WHAT DOESN'T
CHAIR : JAMES BARNES
MANAGING DIRECTOR, NEW FRONTIERS INTERNATIONAL, WELLINGTON, NEW ZEALAND.
PRESENTATION : HON DOUG KIDD,
MINISTER OF LABOUR, NEW ZEALAND
LEX FRIEDEN
SENIOR VICE-PRESIDENT, THE INSTITUTE FOR REHABILITAYION AND RESEARCH.
RYOSUKE MATSUI
DIRECTOR INTERNATIONAL COOPERATION, JAPAN ASSOCIATION FOR EMPLOYMENT OF DISABLED PERSONS
KAZUO SEIKE
PRESIDENT, RESEARCH ASSOCIATION ON WORK FOR EMPLOYMENT OF DISABLED PERSONS
HARTMUT HAINES
FEDERAL MINISTRY OF LABOR AND SOCIAL AFFAIRS
ROGER BARSON
DISABILITYT POLICY AND PLANNING, DEPT OF HUMAN SERVICES AND HEALTH
JEAN SHERRELL-ALEXANDER
AUSTRALIA
VAUGHAN SAMPSON
CHIEF EXECUTIVE, AUCKLAND EMPLOYERS' ASSAOCIATION
ROSS WILSON
VICE-PRESIDENT, NZ COUNCIL OF TRADE UNIONS
GRANT TWEDDLE
EXECUTIVE OFFICER, ACCIDENT REHABILITATION AND COMPENSATION INSURANCE CORPORATION
INTRODUCTION : HON DOUG KIDD
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PRESENTER : KAZUO SEIKE
INTELLECTUAL WORKING OF THE QUADRIPLEGICS MAKING GOOD USE OF TECHNOLOGY
WHO NEED ATTENDANT SERVICES IN JAPAN
In Japan, quads who need attendant services and cannot drive a car find it difficult
to live with their family, not to mention independent living in communities. They
sometimes have to stay in hospital long after they get well or have to enter nursing
homes. It is also hard for them to live in their own home. They have to depend on
their family, public attendant service programmes being far from sufficient. Few
opportunities for significant and gainful jobs are available to them as compared
with people without disabilities. Public offices employ the disabled on the condition
that they can commute and work for themselves. Problems for quads in finding a
job have not yet been resolved.
Such being the case in Japan, the Research Association on Work of the Persons
with Severe Disabilities (RAW) has produced the journal Working Quads and has
been focusing on the intellectual productive activities of quadriplegics. However,
there have emerged, some, not many, quadriplegics who need attendant services
to really work in Japan. We try to find and contact those "working quads" and
make them known to the society through our journal Working Quads.
The RAW was inaugurated in 1989, and consists of quads and specialists. The
RAW has researched the possibility of working (the intellectual productive
activities) of the persons with quadriplegia who need attendant service
programmes and cannot drive a car. In this research, through fact-finding inquiries
on the productive activities of the quadriplegics due to spinal cord injuries and
other impairments in Japan, America, and Canada, we compare the social
background and consider the possibility of using high tech for the productive
activities of the quads, from the point of view of the individual with severe disability.
The RAW has published the journal Working Quads No.1 -No.10. No.9 is A4-size,
124 pages, color four pages, 1,000 copies. Its special issue is Self-employment
and the persons with severe disabilities. No.10 is A4, 174 pages, 1,000 copies.
Its special issues are The Intellectual Productive Activities of Quads Using the PC
System based on Windows Ver 3.1 and The International Network Activities of Quads.
The Working Quads editorial office has 6 editors and 66 writers.
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Editors : Masafumi Ide, Spinal Injuries Center, Department of Rehabilitation
Engineering Research and Development; Fukashi Tsutsumi, Bureau of Sewage of
Fukuoka City; Lo Shihlin, Research Student of Kyushu University ME; Kiyokatsu
Yoshida, Judicial Scrivener; Torahiko Nakashima; Tatsumasa Hosokawa.
Its 66 writers consist of 59 people with severe disability, one paraplegic and six
non-disabled. Of those 59 writers 52 have quadriplegia; four, cerebral palsy; one,
polio sequelae; one muscular dystrophy; and one, infantile rheumatism. Among
the 59 severely disabled who contributed to Working Quads, 28 of them are self-
employed, eleven employed, two students and eighteen unemployed. Twelve
Quad writers receive no pension.
In this presentation, seven cases (Mr TO, Ms IS, Mr TY, Mr KY, Mr HM, Mr FT, and
Ms NS) are introduced from the writers.
Case Report
CASE ONE
Case 1 Mr. T.O., Small-scale self-employment,
the data input and the word processor business in his Home
Photograph
Mr TO. Born in 1962. Male. Acquired his C5 quadriplegia due to an accident, in a
class of physical education as a third year student in prefectural industrial high
school,in 1980. Entered Iwate Workers' Accident Compensation Hospital in 1981.
Entered a nursing home " Yoshihamaso " in 1982. Began to work on the word
processor (NEC 7RA) for a printing office nearby in 1990. Began independent
living after leaving the Nursing Home in May 1992. Got married in May 1992.
Receives a basic pension disability and the special physically handicapped person
allowance. Using mouth sticks, a telephone with speakerphone, a powered hoist,
manual wheelchairs, a powered wheelchair, and a station wagon (his wife drives).
Running his own small business in his home. Data input and the word processor
business are done by using his personal computer, PC9801FA (CPU 486) and the
FAX-Modem. He lives in a private apartment in Morioka City, Iwate and the
attendant person is his wife. He is healthy, and the length of his service is six
years.
CASE TWO
Case 2 Ms. I.S., Professional self-employment,
Management of a private tutoring shcool in her home.
Photograph
The photograph is a class scenery in her own house. Ms. I.S. is a right edge.
Ms IS. Born in 1956. Female. Entered the English literature faculty of
Seinangakuin University in April, 1975. Acquired her C6 quadriplegia due to a
traffic accident in August 1978. Entered Kyushu Workers' Accident Compensation
Hospital in September 1978. Moved to the Spinal Injuries Center, Japan in
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September 1979. Went back home and returned to the University in April 1980.
Began to tutor junior and senior high students in English at home in June 1980.
Graduated from the University in March 1981. Receives no pension. Receives the
special physically handicapped person allowance. Lives with her family in her own
house and attendant persons are her mother and home helpers . Useing a
telephone with speakerphone, a fax machine, manual wheelchairs, and a word
processor (MS-DOS text file function). The English study progrmmes in her
own house. It is an private lesson of one to two high school and junior high school
students of two hours at a time. She is healthy and the length of her service is
fifteen years. She lives in Munakata County, Fukuoka Prefecture.
CASE THREE
Case 3 Mr. T.Y., Professional self-employment;
Free lance computer programmer and system engineer in his home.
Photograph
Mr. TY, special running one's own business, and software development of free (programming)
Mr TY. Born in 1958. Male. Entered the department of engineering of Meiji
University in April, 1978. Acquired his C7 left C6 right incomplete quadriplegia due
to a traffic accident in October 1980 when working part-time. Entered Tokyo
Koseinenkin Hospital. Moved to Yutaka Home of Japan Sun Industries in Beppu
City in December 1981. Entered employment joining a company of the Mitsubishi
Corp & Japan Sun Industries Inc. in February 1984. Married on December 2 1985.
Got the qualification "Data Processing 1st grade" in January 1989. Was
determined to returns to hometown in time for his father's death in 1990. Began
to works as a free lance computer programmer and system engineer in October
1991 Receives the Workers' Accident Compensation pension and the special
physically handicapped person allowance. Lives with his wife and two children in
his own house using a manual wheelchair. Drives a remodelled car. Using a
computer NEC "Xt" system (CPU Pentium 166MH), memory 32MB, hard disk
drive 3.1GB, 17 inch display. ISDN telephone line, Terminal Adapter 64KB, MS
Word (WIN), Visual C++ (WIN), MS-C Ver 6.0 (DOS), MASM Ver 5.1 (DOS),
N88BASIC (DOS), ACCESS (WIN), CA-dBFast (WIN). Develops software related
programs to the factory by using the C language, BASIC, and the assembler with
Windows machine Xt. The design and the programming are done in the language
corresponding to the demand of the purchaser. Is healthy, and the length of his
service is twelve years. Works twelve hours a day on the average. Lives in
Nobeoka City, Miyazaki Prefecture.
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CASE FOUR
Case 4 Mr. K.Y.,
Professional Self-Employment, judicial scrivener in his office
Photograph
Mr. KY, special running his own business, judicial scrivener
Mr KY. Born in 1962. Male. Acquired his C6-7 quadriplegia due to a sport
accident of Judo and entered the Kyushu Workers' Accident Compensation
Hospital in August, 1979. Discharged from hospital to home and returned to his
high school in April 1980. Entered the law faculty of Kitakyushu University in April
1982. Lived with his parents in an apartment in the vicinity of the university.
Graduated from the master course of law faculty of the University in March 1988.
Got the license of a judicial scrivener in December 1988. Business training began
in the Judicial Scrivener Office in May in 1989; judicial scrivener registration in
June in 1990. Began to manage his "Y office" in Nakatsu City in Oita Prrefecture in
July 1990. Office establishment in July in the same year. Receives a national
basic disability pension and the special physically handicapped person allowance.
Lives with his parents and the attendant person is his mother in his own house. In
his office there are two clerks. Specialises in running his own business as a
judicial scrivener. Using manual wheelchairs, a fax machine, and a Hitachi
personal computer and judicial scrivener business software. Drives a remodelled
car for commuting. Is healthy, and the length of his service is three months of five
years. Lives in Chikujo County, Fukuoka Prefecture.
CASE FIVE
Case 5 Mr. H.M., Large-scale self-employment,
management of his building for rent in his home and his office
President of the company to maintain his building for rent
Photograph
Mr. HM, large-scale running one's own business, building maintain company president
Mr HM. Born in 1938. Male. Entered Law Course of Tokyo University in 1958.
Acquired his C6 quadriplegia due to a car accident, in August, 1959. Discharged
from hospital to his home in 1962. After leaving Tokyo University, tutored at home
and manages parking lots. Established a company in 1968. Left home in the
summer of 1970 at the age of 32 and moved to the house at the coast which his
father had built. Planed to build a building for rent on his father's land close to the
railway station instead of doing the parking lot. Financing is applied to the Housing
Loan Corporation for the building construction capital and the capital of about 70
per cent of the architectural expense 160,000,000 yen could be borrowed.
Negotiated financing on the architectural capital to bank as for the remainder of the
architectural expense. His father offered the construction site as security for the
loan. The building of seven storeys was completed in 1979. Lives by handling the
paid attendant persons in his own house in Japan (spring, summer, autumn) and
the Philippines (winter). Hires a clerk to maintain the building. Using mouth sticks,
a powered hoist, a telephone with speakerphone, a fax machine, manual
wheelchairs, a powered wheelchair with reclining system, one box car with ramp
(his attendant drives), NEC personal computer, PC9801US2 (CPU 386) and
PC9821V7 (CPU, Pentium 75MH), 16MB memory, 500MB HDD, 15 inch display,
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and a modem with Windows 95. Running Koyokosan Inc and 'Green Life
Institution in Japan'. Published two books, The Reviving Buddhism and
A Revived Life. After establishing the company at the age of 29, the length of his
service is 28 years. Is healthy, but was several times hospitalized due to
pneumonia etc. both in Japan and the Philippines. Lives in Kitakyushu City,
Fukuoka Prefecture.
CASE SIX
Case 6 Mr. F.T.,
Employment, reinstatement of the Bureau of Sewage of Fukuoka City
Chubu Sewage Treatment Plant
Photograph
Mr. FT, employment, at his office of the Bureau of Sewage of Fukuoka City,
Chubu Sewage Treatment Plant
Mr FT. Born in 1943. Male. Graduated from the Department of Engineering of
Kyushu University in 1967. Entered employment of the Bureau of Sewage of
Fukuoka City in 1967. Acquired his C7 incomplete quadriplegia due to a traffic
accident while commuting in service of Fukuoka city office in 1985. Entered the
Spinal Injuries Center, Japan. Went back to his own home in 1987. Returned to
the employment of the Bureau of Sewage of Fukuoka City in 1988. Was assigned
to the Chubu Sewage Treatment Plant in 1988. Receives employment income and
Workers' Accident Compensation pension, etc. The mutual aid pension is
stopping. Lives with his family and the attendant person is his wife in his own
house. Using manual wheelchairs and powered hoist in his house. Employment
and reinstatement. Works as an engineer using a computer with Ichitaro, Lotus
123 etc. for making various documents and the data arrangements and explains
about the Chubu Sewage Treatment Plant to visitors. Using a computer
NEC "DA" system (CPU 386), hard disk drive 40MB, 14inch display. In his work,
the personal computer operation is 70 percent. Commuting between the office
and his home is by taxi and by the help of his wife. His wife commutes between
office and home to provide the assistance for meal and .toileting during the day.
She commutes three times a day. He is healthy, and the length of his service is
seven years since being reinstated in December 1988. It is the same working
hours as colleague without disability in the office. Lives in Fukuoka City, Fukuoka
Prefecture.
CASE SEVEN
Case 7 Ms. N.S.,
Employment, Return to Employment of Amagasaki City Junior High-school
Photograph
Mr. NS, employment, Amagasaki city teacher reinstatement
Ms NS. Born in 1943. Female. Acquired her C4 quadriplegia due to a ballooning
accident during her overseas travel to Kenya in August 1989. Enteted hospital.
After returning to Japan, entered the Kansai Workers' Accident Compensation
Hospital in September in the same year. Complete weaning from ventilatory support
was in 1990. Left the hospital and moved into a lease apartment house
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in September 1992. Gave class of science open to the public in elementary school
and in junior high school in December in the same year as a lecturer. The
reinstatement wish is submitted to the city educational committee on December
18 1992. The attached hospital medical certificate was conditionally assumed to
be "reinstatement is possible". Amagaaki City Educational Committee and Hyogo
Prefecture Educational Committee notified her of the admission of the
reinstatement wish on February 5 1993. Returned to employment as a Junior High
School science teacher of Amagasaki City on February 8 1993. Training work at
Amagasaki Municipal Education center. As for the content of her work, it is
science education and welfare education. Receives employment income and Workers'
Accident Compensation pension, etc. The Mutual Aid pension is stopping. Lives
with two volunteers in her lease apartment house. Is attended by paid
attendants and volunteers. Using mouth sticks, the Environmental Control
System, manual wheelchairs, and a powered chin control wheelchair with reclining
system, a telephone with speakerphone, and a personal computer PC9801RA
(CPU.386). Is healthy, and the length of her service is three years. Lives in
Amagasaki City, Hyogo Prefecture.
DISCUSSION
Seven personal cses have been introduced through this case report. In terms of
self-employment and return to employment, quads have improved their quality of
working life by thinking, communicating, and efficiently utilizing high-tech and
attendant services within their abilities and assets. They create their own future
from the small scale self-employment (Mr TO, data entry), to the professional self-
employment (Ms IS, management of private tutoring school; Mr TY, system
engineer; Mr KY, judicial scrivener) to the large scale self-employment (Mr HM,
management of his building for rent) There is a lot of self-employment which is not
accompanied by the commuting load. Mr FT and Ms. NS were introduced as
examples of return to the employment work and their former position as
pubic servants. A quad cannot acquire a driving license.
But compared with the U.S.A., very few quads work as professionals or members of
the management in Japan.
The presenter studied abroad with assistance from the Project of Training and
Study of Japanese Disabled Persons in the USA, and the Japanese Society for
Rehabilitation of the Disabled Inc and the Circle of Love Foundation from 1985 to
1986, and researched the Attendant Service Programes and the Independent
Living Movement of people with disabilities at the Centre for Independent Living in
Berkeley and the World Institute on Disability.
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In 1990, we received a Research Grant by the Toyota Foundation for
comparative study of Japan and the USA on participation in the process of the
productive activities of quadriplegics with spinal cord injuries and the new
possibility by efficient utilization of High Tech. In 1991, the presenter researched
and interviewed with C1-2 quad in San Francisco, USA, and attended the conference
"Independent Living-Preparing for the 21st Century".
As for utilizing high tech, Japan does not delay compared with the USA., but very
few people with severe physical disabilities work as professionals. There are
many specialists, members of management, and executive directors of Centres for
Independent Living in the United States. In America many quadriplegics due to
spinal cord injuries participate in the process of the productive activities, in the
background, as well as a various support system using high tech. The social
consensus, as in the Americans with Disabilities Act, not to accept discrimination
against people with disabilities is a significant factor. It is a problem in the future.
CONCLUSION
Quadriplegics, typically represented by quadriplegia due to spinal cord injury, have
no intellectual disability. It is not constructive that quadriplegics with intellectual
abilities live in nursing home, special nursing home for the aged and the hospital, etc. It is
a problem from the point of the quality of life. It is a doubtful that there is no option
in the above all.
Even
Quads can live independently, which consists of working if there are attendant
services, houses to live in, mobility and education. It is very useful for quads, their
families and society to share the information which can reduce the quantity of
assistance for quads and increase their intellectual productiveness.
For this purpose, the RAW would like to play a central role to form an information
network and build a database which would help to empower the quads who need
attendant services and cannot drive a car to work.
In November 1994, the RAW was awarded a research grant by the Marubeni
Foundation. We are working on a project to form the Network of the Quad Writers
and to construct the database for the purpose of the intellectual productive activities of
people with severe disabilities.
We think the quads who exchange information and personal contact recover more
easily. It is very important to form a database of information. The research
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association on the work of persons with severe disabilities and its journal Working
Quads will continue to build information networks to present useful information.
We wish to express our gratitude deeply to the Japanese Society for Rehabilitation
of the Disabled, the Circle of Love Foundation, the Toyota Foundation and the
Marubeni Foundation, which cooperate in and support the investigational research
and the project of the presenter and RAW.
C2 quadriplegia due to a sport accident,
Mr. Kenji Yoshida
ventrilator user,
in-home living,
C1 quadriplegia due to an ccident,
Mr. Masahiro Ueda
ventrilator user,
cannot eat, drink,
in-home living,
