Family Movement
Encyclopedia
The Family Movement, also known in the past as the Parent Movement, is an arm of the disability rights movement, a larger social movement
. The Family Movement advocates for the economic and social rights
of family members with a disability
. Key elements include: social inclusion; active participation; a life of meaning; safety
; economic security
; accessibility
and self-determination
. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship; increasing access to health care
; developing real jobs; fighting stereotype
s and reducing discrimination
.
, the US, England
, France
, Scandinavia
, Australia
and New Zealand
began asserting a different vision, a different lifestyle and a different future for their sons and daughters with intellectual disabilities, mental handicaps and developmental disabilities
. These isolated, independent developments eventually coalesced into the first wave of the ‘parent movement’. They organized and demanded services for their sons and daughters. Their efforts eventually resulted in the UN Declaration on the Rights of Disabled Persons, December 9, 1975.. (Note: while this terminology is not used today it was the commonly accepted terminology 6 or 7 decades ago.) This has subsequently been eclipsed by the UN Convention on the Rights of Persons with Disabilities
which was equally influenced by the emerging and now very strong consumer ‘independent living
’ arm of the disability movement.
In those early formative days families around the world began to question the accepted wisdom that they should institutionalize their son or daughter with a disability. But parents were isolated from each other. They had no way of knowing who else felt the same way. It was not easy for parents to get to know each other. Some resorted to placing ads in newspapers. Even here they faced challenges as some newspapers felt it was inappropriate to advertise the fact you had a child with a disability. It is hard to understand today but this was the accepted wisdom of the time.
As they started coming together families began to create opportunities, programs and supports for their sons and daughters. They created programs with few resources. Taking over church basements to set up schools; borrowing chalk
, discarded books form school boards who would not accept educational responsibility for educating their sons and daughters.
These parents and their community supporters formed the Associations for Retarded Children. These organizations are now called Associations for Community Living. Following their example organizations for people with cerebral palsy, hearing and visual impairments, autism and other handicapping conditions were started.
Three famous Americans (two parents and one brother) had a major impact on public perceptions of disability in the 1950s and 1960s were:
One was Nobel Prize
winner Pearl Buck who wrote about her daughter Carol in the book The Child Who Never Grew. The other was Dale Evans
who starred with her husband Roy Rogers
in a popular television western wrote Angel Unaware about her daughter with Down Syndrome
.
The third was President John F. Kennedy
, whose sister Rosemary had a mental handicap. In 1961 he launched the President’s Panel on Mental Retardation which became the President’s Committee on Mental Retardation. These three combined with the work of parents and family members brought the issue out of the closet, eased the stigma of having a child with a disability and became a major source of hope for families.
In 1961 the International League of Societies for the Mentally Handicapped was formed. This organization is now called Inclusion International.
The UN Declaration on the Rights of Disabled Persons
was adopted by the United Nations
General Assembly on December 9, 1975.
One of the most important contributions to the parent/family movement was the introduction of the concept of Normalization (people with disabilities). Originating in Denmark
with Erik Bank-Mikkelsen and Bengt Nirjeit normalization principles were adapted in North America by Wolf Wolfensberger
.
Wolfensberger wrote his seminal work in Toronto
in the early 1970s as a visiting scholar to the Canadian Association for the Mentally Retarded and the National Institute on Mental Retardation – the national bodies for the local parent founded organizations. Wolfensberger’s theory is now called Social Role Valorisation.
Eventually with persistence, patience and ingenuity the government funded system of social, educational and health programs and services took shape.
By the 1980s the parent/family movement had successfully established a comprehensive program and service infrastructure. It was natural for them to support their sons and daughters who were creating their own movements : Independent Living
and self-advocacy
movement.
* Tranquille Institution in Tranquille, Kamloops
, British Columbia
* Glendale Institution
* Woodlands Institution
* Family Support Institute
* Vela Microboard Association
* Planned Lifetime Advocacy Network (PLAN)
* Community Living Society
* BC Self Advocacy Foundation
* Vancouver Adaptive Snow Sports
* Tetra Society of North America
* Kickstart Society for Disability Arts and Culture
* Can Assist
* Communitas Supportive Care Society
* Willowbrook State School
, Staten Island New York (Video)
* AHRC
, New York City
(Note: Addition regional histories)
Social movement
Social movements are a type of group action. They are large informal groupings of individuals or organizations focused on specific political or social issues, in other words, on carrying out, resisting or undoing a social change....
. The Family Movement advocates for the economic and social rights
Social rights
Economic, social and cultural rights are socio-economic human rights, such as the right to education, right to housing, right to adequate standard of living and the right to health. Economic, social and cultural rights are recognised and protected in international and regional human rights...
of family members with a disability
Disability
A disability may be physical, cognitive, mental, sensory, emotional, developmental or some combination of these.Many people would rather be referred to as a person with a disability instead of handicapped...
. Key elements include: social inclusion; active participation; a life of meaning; safety
Safety
Safety is the state of being "safe" , the condition of being protected against physical, social, spiritual, financial, political, emotional, occupational, psychological, educational or other types or consequences of failure, damage, error, accidents, harm or any other event which could be...
; economic security
Economic security
Economic security or financial security is the condition of having stable income or other resources to support a standard of living now and in the foreseeable future...
; accessibility
Accessibility
Accessibility is a general term used to describe the degree to which a product, device, service, or environment is available to as many people as possible. Accessibility can be viewed as the "ability to access" and benefit from some system or entity...
and self-determination
Self-determination
Self-determination is the principle in international law that nations have the right to freely choose their sovereignty and international political status with no external compulsion or external interference...
. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship; increasing access to health care
Health care
Health care is the diagnosis, treatment, and prevention of disease, illness, injury, and other physical and mental impairments in humans. Health care is delivered by practitioners in medicine, chiropractic, dentistry, nursing, pharmacy, allied health, and other care providers...
; developing real jobs; fighting stereotype
Stereotype
A stereotype is a popular belief about specific social groups or types of individuals. The concepts of "stereotype" and "prejudice" are often confused with many other different meanings...
s and reducing discrimination
Discrimination
Discrimination is the prejudicial treatment of an individual based on their membership in a certain group or category. It involves the actual behaviors towards groups such as excluding or restricting members of one group from opportunities that are available to another group. The term began to be...
.
The Parent/Family Arm of the Disability Movement
In the late 1940s and early 1950s families spontaneously across CanadaCanada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...
, the US, England
England
England is a country that is part of the United Kingdom. It shares land borders with Scotland to the north and Wales to the west; the Irish Sea is to the north west, the Celtic Sea to the south west, with the North Sea to the east and the English Channel to the south separating it from continental...
, France
France
The French Republic , The French Republic , The French Republic , (commonly known as France , is a unitary semi-presidential republic in Western Europe with several overseas territories and islands located on other continents and in the Indian, Pacific, and Atlantic oceans. Metropolitan France...
, Scandinavia
Scandinavia
Scandinavia is a cultural, historical and ethno-linguistic region in northern Europe that includes the three kingdoms of Denmark, Norway and Sweden, characterized by their common ethno-cultural heritage and language. Modern Norway and Sweden proper are situated on the Scandinavian Peninsula,...
, Australia
Australia
Australia , officially the Commonwealth of Australia, is a country in the Southern Hemisphere comprising the mainland of the Australian continent, the island of Tasmania, and numerous smaller islands in the Indian and Pacific Oceans. It is the world's sixth-largest country by total area...
and New Zealand
New Zealand
New Zealand is an island country in the south-western Pacific Ocean comprising two main landmasses and numerous smaller islands. The country is situated some east of Australia across the Tasman Sea, and roughly south of the Pacific island nations of New Caledonia, Fiji, and Tonga...
began asserting a different vision, a different lifestyle and a different future for their sons and daughters with intellectual disabilities, mental handicaps and developmental disabilities
Developmental disability
Developmental disability is a term used in the United States and Canada to describe lifelong disabilities attributable to mental or physical impairments, manifested prior to age 18. It is not synonymous with "developmental delay" which is often a consequence of a temporary illness or trauma during...
. These isolated, independent developments eventually coalesced into the first wave of the ‘parent movement’. They organized and demanded services for their sons and daughters. Their efforts eventually resulted in the UN Declaration on the Rights of Disabled Persons, December 9, 1975.. (Note: while this terminology is not used today it was the commonly accepted terminology 6 or 7 decades ago.) This has subsequently been eclipsed by the UN Convention on the Rights of Persons with Disabilities
Convention on the Rights of Persons with Disabilities
The Convention on the Rights of Persons with Disabilities is an international human rights instrument of the United Nations intended to protect the rights and dignity of persons with disabilities...
which was equally influenced by the emerging and now very strong consumer ‘independent living
Independent living
Independent living, as seen by its advocates, is a philosophy, a way of looking at disability and society, and a worldwide movement of people with disabilities working for self-determination, self-respect and equal opportunities...
’ arm of the disability movement.
In those early formative days families around the world began to question the accepted wisdom that they should institutionalize their son or daughter with a disability. But parents were isolated from each other. They had no way of knowing who else felt the same way. It was not easy for parents to get to know each other. Some resorted to placing ads in newspapers. Even here they faced challenges as some newspapers felt it was inappropriate to advertise the fact you had a child with a disability. It is hard to understand today but this was the accepted wisdom of the time.
As they started coming together families began to create opportunities, programs and supports for their sons and daughters. They created programs with few resources. Taking over church basements to set up schools; borrowing chalk
Chalk
Chalk is a soft, white, porous sedimentary rock, a form of limestone composed of the mineral calcite. Calcite is calcium carbonate or CaCO3. It forms under reasonably deep marine conditions from the gradual accumulation of minute calcite plates shed from micro-organisms called coccolithophores....
, discarded books form school boards who would not accept educational responsibility for educating their sons and daughters.
These parents and their community supporters formed the Associations for Retarded Children. These organizations are now called Associations for Community Living. Following their example organizations for people with cerebral palsy, hearing and visual impairments, autism and other handicapping conditions were started.
Three famous Americans (two parents and one brother) had a major impact on public perceptions of disability in the 1950s and 1960s were:
One was Nobel Prize
Nobel Prize
The Nobel Prizes are annual international awards bestowed by Scandinavian committees in recognition of cultural and scientific advances. The will of the Swedish chemist Alfred Nobel, the inventor of dynamite, established the prizes in 1895...
winner Pearl Buck who wrote about her daughter Carol in the book The Child Who Never Grew. The other was Dale Evans
Dale Evans
Dale Evans, was an American writer, movie star, and singer-songwriter. She was the third wife of singing cowboy Roy Rogers.-Early life:...
who starred with her husband Roy Rogers
Roy Rogers
Roy Rogers, born Leonard Franklin Slye , was an American singer and cowboy actor, one of the most heavily marketed and merchandised stars of his era, as well as being the namesake of the Roy Rogers Restaurants franchised chain...
in a popular television western wrote Angel Unaware about her daughter with Down Syndrome
Down syndrome
Down syndrome, or Down's syndrome, trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The condition was clinically described earlier in the 19th...
.
The third was President John F. Kennedy
John F. Kennedy
John Fitzgerald "Jack" Kennedy , often referred to by his initials JFK, was the 35th President of the United States, serving from 1961 until his assassination in 1963....
, whose sister Rosemary had a mental handicap. In 1961 he launched the President’s Panel on Mental Retardation which became the President’s Committee on Mental Retardation. These three combined with the work of parents and family members brought the issue out of the closet, eased the stigma of having a child with a disability and became a major source of hope for families.
In 1961 the International League of Societies for the Mentally Handicapped was formed. This organization is now called Inclusion International.
The UN Declaration on the Rights of Disabled Persons
Declaration on the Rights of Disabled Persons
The Declaration on the Rights of Disabled Persons was a declaration of the General Assembly of the United Nations, made on 9 December 1975. It is the 3447th resolution made by the Assembly....
was adopted by the United Nations
United Nations
The United Nations is an international organization whose stated aims are facilitating cooperation in international law, international security, economic development, social progress, human rights, and achievement of world peace...
General Assembly on December 9, 1975.
One of the most important contributions to the parent/family movement was the introduction of the concept of Normalization (people with disabilities). Originating in Denmark
Denmark
Denmark is a Scandinavian country in Northern Europe. The countries of Denmark and Greenland, as well as the Faroe Islands, constitute the Kingdom of Denmark . It is the southernmost of the Nordic countries, southwest of Sweden and south of Norway, and bordered to the south by Germany. Denmark...
with Erik Bank-Mikkelsen and Bengt Nirjeit normalization principles were adapted in North America by Wolf Wolfensberger
Wolf Wolfensberger
Wolf Wolfensberger Born in Mannheim, Germany in 1934, Dr. Wolfensberger was an American academic who influenced disability policy and practice in the United States and elsewhere through his development of Social Role Valorisation . SRV extended the work of Bengt Nirje in Europe on Normalisation...
.
Wolfensberger wrote his seminal work in Toronto
Toronto
Toronto is the provincial capital of Ontario and the largest city in Canada. It is located in Southern Ontario on the northwestern shore of Lake Ontario. A relatively modern city, Toronto's history dates back to the late-18th century, when its land was first purchased by the British monarchy from...
in the early 1970s as a visiting scholar to the Canadian Association for the Mentally Retarded and the National Institute on Mental Retardation – the national bodies for the local parent founded organizations. Wolfensberger’s theory is now called Social Role Valorisation.
Eventually with persistence, patience and ingenuity the government funded system of social, educational and health programs and services took shape.
By the 1980s the parent/family movement had successfully established a comprehensive program and service infrastructure. It was natural for them to support their sons and daughters who were creating their own movements : Independent Living
Independent living
Independent living, as seen by its advocates, is a philosophy, a way of looking at disability and society, and a worldwide movement of people with disabilities working for self-determination, self-respect and equal opportunities...
and self-advocacy
Self-advocacy
Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own...
movement.
British Columbia, Canada
- Closure of all 3 major institutions
* Tranquille Institution in Tranquille, Kamloops
Tranquille, Kamloops
Tranquille is a neighbourhood of the City of Kamloops, British Columbia, Canada, located on the northeast side of Kamloops Lake. It is the site of the Tranquille Institution, a youth prison, which was formerly and variously an Indian residential school, a home for the mentally handicapped, a...
, British Columbia
British Columbia
British Columbia is the westernmost of Canada's provinces and is known for its natural beauty, as reflected in its Latin motto, Splendor sine occasu . Its name was chosen by Queen Victoria in 1858...
* Glendale Institution
* Woodlands Institution
- Closure of all segregated schools
- Creation of innovative organizations
* Family Support Institute
* Vela Microboard Association
* Planned Lifetime Advocacy Network (PLAN)
* Community Living Society
* BC Self Advocacy Foundation
* Vancouver Adaptive Snow Sports
* Tetra Society of North America
Tetra Society of North America
Tetra Society of North America is a not-for-profit organization that provides volunteer engineers across Canada and the US to design and construct custom assistive devices for people with disabilities.-History:...
* Kickstart Society for Disability Arts and Culture
* Can Assist
* Communitas Supportive Care Society
- Creating a unique alternative to legal guardianLegal guardianA legal guardian is a person who has the legal authority to care for the personal and property interests of another person, called a ward. Usually, a person has the status of guardian because the ward is incapable of caring for his or her own interests due to infancy, incapacity, or disability...
ship which includes establishing a test of legal capacity that recognizes caring trusting relationships - Pioneering individualized funding and service brokerage
New York, United States
- Closure of Major Institutions
* Willowbrook State School
Willowbrook State School
Willowbrook State School was a state-supported institution for children with intellectual disabilities located in the Willowbrook neighborhood of Staten Island in New York City from the 1930s until 1987....
, Staten Island New York (Video)
- Creation of innovative organizations
* AHRC
AHRC
AHRC can refer to:* Asian Human Rights Commission* Arts and Humanities Research Council* Association for the Help of Retarded Children* American Homeowners Resource Center* Australian Human Rights Commission...
, New York City
Timeline
- 1952 - establishment of Vancouver Association for Retarded Children
- 1955 – establishment of BC Association for Retarded Children by seven local parent associations
- 1958 – Canadian Association Retarded Persons founded (now Canadian Association for Community Living –CACL)
- 1981 - International Year of Disabled Persons
- 1984- Tranquille blockade
- 1982 - Stephen Dawson Supreme Court case establishes right of children with disabilities to receive medical care
- 1985 - closure of Tranquille Institution
- 1996 - closure of Glendale Institution
- 1996 - closure of Woodlands Institution
- 1986 – Family Support Institute founded
- 1987 - Closure of worlds largest state-supported institution: Willowbrook State SchoolWillowbrook State SchoolWillowbrook State School was a state-supported institution for children with intellectual disabilities located in the Willowbrook neighborhood of Staten Island in New York City from the 1930s until 1987....
, Staten Island New York - 1988 - First Federal Election recognizing the rights of people with developmental disabilities to vote
- 1988 - Establishment of BC Self Advocacy Foundation
- 1992 - Barb Goode first self advocate to address the United Nations General assembly
- 1993 - new Adult Guardianship legislation
- 2000 - establishment of Representation Agreement Act - first statute in the world to accept caring trusting relationships as a criterion for determining legal capability
- 2004 - Establishment of CLBC - Crown Corporation
(Note: Addition regional histories)
External links
- http://www.familysupportbc.com/ The Family Support Institute of British Columbia
- http://www.microboard.org/ Vela Microboard Association
- http://www.plan.ca/ Planned Lifetime Advoacy Network
- http://www.cls-bc.org/ Community Living Society of British Columbia
- http://www.bcacl.org/ The British Columbia Association for Community Living
- http://www.vass.ca/
- http://www.tetrasociety.org/ Tetra Society of North America
- http://www.s4dac.org/
- http://www.canassist.ca/
- Communitas Supportive Care Society