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The Family Movement, also known in the past as the Parent Movement, is an arm of the disability rights movement, a larger
social movement A social movement is either a loosely or carefully organized effort by a large group of people to achieve a particular goal, typically a Social issue, social or Political movement, political one. This may be to carry out a social change, or to re ...
. The Family Movement advocates for the economic and
social rights Economic, social and cultural rights (ESCR) are socio-economic human rights, such as the right to education, right to housing, right to an adequate standard of living, right to health, victims' rights and the right to science and culture. Econo ...
of family members with a
disability Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society. Disabilities may be Cognitive disability, cognitive, Developmental disability, d ...
. Key elements include:
social inclusion Social exclusion or social marginalisation is the social disadvantage and relegation to the fringe of society. It is a term that has been used widely in Europe and was first used in France in the late 20th century. In the EU context, the Euro ...
; active participation; a life of meaning;
safety Safety is the state of being protected from harm or other danger. Safety can also refer to the control of recognized hazards in order to achieve an acceptable level of risk. Meanings The word 'safety' entered the English language in the 1 ...
;
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. It includes: * probable continued solvency * predictability of the future cash ...
; accessibility and
self-determination Self-determination refers to a people's right to form its own political entity, and internal self-determination is the right to representative government with full suffrage. Self-determination is a cardinal principle in modern international la ...
. The family movement has been critical in closing institutions and other segregated facilities; promoting
inclusive education Inclusion in education refers to including all students to equal access to equal opportunities of education and learning, and is distinct from educational equality or educational equity. It arose in the context of special education with an in ...
; reforming adult guardianship to the current supported decision-making; increasing access to
health care Health care, or healthcare, is the improvement or maintenance of health via the preventive healthcare, prevention, diagnosis, therapy, treatment, wikt:amelioration, amelioration or cure of disease, illness, injury, and other disability, physic ...
; developing real jobs; fighting
stereotype In social psychology, a stereotype is a generalization, generalized belief about a particular category of people. It is an expectation that people might have about every person of a particular group. The type of expectation can vary; it can ...
s and reducing
discrimination Discrimination is the process of making unfair or prejudicial distinctions between people based on the groups, classes, or other categories to which they belong or are perceived to belong, such as race, gender, age, class, religion, or sex ...
.


The Parent/Family Arm of the Disability Movement

In the late 1940s and early 1950s families spontaneously across
Canada Canada is a country in North America. Its Provinces and territories of Canada, ten provinces and three territories extend from the Atlantic Ocean to the Pacific Ocean and northward into the Arctic Ocean, making it the world's List of coun ...
, the US,
England England is a Countries of the United Kingdom, country that is part of the United Kingdom. It is located on the island of Great Britain, of which it covers about 62%, and List of islands of England, more than 100 smaller adjacent islands. It ...
,
France France, officially the French Republic, is a country located primarily in Western Europe. Overseas France, Its overseas regions and territories include French Guiana in South America, Saint Pierre and Miquelon in the Atlantic Ocean#North Atlan ...
,
Scandinavia Scandinavia is a subregion#Europe, subregion of northern Europe, with strong historical, cultural, and linguistic ties between its constituent peoples. ''Scandinavia'' most commonly refers to Denmark, Norway, and Sweden. It can sometimes also ...
,
Australia Australia, officially the Commonwealth of Australia, is a country comprising mainland Australia, the mainland of the Australia (continent), Australian continent, the island of Tasmania and list of islands of Australia, numerous smaller isl ...
and
New Zealand New Zealand () is an island country in the southwestern Pacific Ocean. It consists of two main landmasses—the North Island () and the South Island ()—and List of islands of New Zealand, over 600 smaller islands. It is the List of isla ...
began asserting a different vision, a different lifestyle and a different future for their sons and daughters with
intellectual disabilities Intellectual disability (ID), also known as general learning disability (in the United Kingdom), and formerly mental retardation (in the United States), Rosa's Law, Pub. L. 111-256124 Stat. 2643(2010).Archive is a generalized neurodevelopmental ...
,
mental handicap Intellectual disability (ID), also known as general learning disability (in the United Kingdom), and formerly mental retardation (in the United States), Rosa's Law, Pub. L. 111-256124 Stat. 2643(2010).Archive is a generalized neurodevelopmental d ...
s and
developmental disabilities Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, espe ...
. 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 The Convention on the Rights of Persons with Disabilities is an international human rights instrument, international human rights multilateral treaty, treaty of the United Nations intended to protect the rights and dignity of persons with Disabil ...
which was equally influenced by the emerging and now very strong consumer '
independent living Independent living (IL), as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of disabled people working for Equal opportunity, equal opportunities, self-determination, and self-respect. ...
' 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 is a soft, white, porous, sedimentary carbonate rock. It is a form of limestone composed of the mineral calcite and originally formed deep under the sea by the compression of microscopic plankton that had settled to the sea floor. Ch ...
, discarded books from
school board A board of education, school committee or school board is the board of directors or board of trustees of a school, local school district or an equivalent institution. The elected council determines the educational policy in a small regional area, ...
s 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 in Canada. Following their example organizations for people with cerebral palsy (concurrent time period of the Arc), hearing and visual impairments, autism and other handicapping conditions were started. Parents were also involved as parent-professional partners at university centers, and were given additional funds to begin cross-disability offices, and even family support agencies with preferential hiring practices. Three famous Americans (two parents and one brother) had a major impact on public perceptions of disability in the 1950s and 1960s. One was
Nobel Prize The Nobel Prizes ( ; ; ) are awards administered by the Nobel Foundation and granted in accordance with the principle of "for the greatest benefit to humankind". The prizes were first awarded in 1901, marking the fifth anniversary of Alfred N ...
winner
Pearl Buck Pearl Comfort Sydenstricker Buck (June 26, 1892 – March 6, 1973) was an American writer and novelist. She is best known for ''The Good Earth'', the best-selling novel in the United States in 1931 and 1932 and which won her the Pulitzer Prize ...
who wrote about her daughter Carol in the book ''The Child Who Never Grew''. The other was
Dale Evans Dale Evans Rogers (born Frances Octavia Smith; October 31, 1912 – February 7, 2001) was an American actress, singer, and songwriter. She was the second wife of singing cowboy film star Roy Rogers. Early life and career Dale Evans was born ...
who starred with her husband
Roy Rogers Roy Rogers (born Leonard Franklin Slye; November 5, 1911 – July 6, 1998), nicknamed the King of the Cowboys, was an American singer, actor, television host, and Rodeo, rodeo performer. Following early work under his given name, first as a c ...
in a popular television western wrote ''Angel Unaware'' about her daughter with Down Syndrome. The third was President
John F. Kennedy John Fitzgerald Kennedy (May 29, 1917 – November 22, 1963), also known as JFK, was the 35th president of the United States, serving from 1961 until his assassination in 1963. He was the first Roman Catholic and youngest person elected p ...
, 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 The President's Committee for People with Intellectual Disabilities (PCPID) is an advisory body that provides assistance to the President of the United States and the Secretary of Health and Human Services on public policy issues related to intel ...
. 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 The United Nations (UN) is the Earth, global intergovernmental organization established by the signing of the Charter of the United Nations, UN Charter on 26 June 1945 with the stated purpose of maintaining international peace and internationa ...
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 is a Nordic countries, Nordic country in Northern Europe. It is the metropole and most populous constituent of the Kingdom of Denmark,, . also known as the Danish Realm, a constitutionally unitary state that includes the Autonomous a ...
with Erik Bank-Mikkelsen and Bengt Nirjeit normalization principles were adapted in North America by
Wolf Wolfensberger Wolf Peregrin Joachim Wolfensberger, Ph.D. (1934–2011) was a German American academic who influenced disability policy and practice through his development of North American Normalization and social role valorization (SRV). SRV extended the ...
. Dr. Wolfensberger fully supported families, and to some extent, parental control in decisionmaking. Wolfensberger wrote his seminal work in
Toronto Toronto ( , locally pronounced or ) is the List of the largest municipalities in Canada by population, most populous city in Canada. It is the capital city of the Provinces and territories of Canada, Canadian province of Ontario. With a p ...
in the early 1970s as a visiting scholar to the Canadian Association for the Mentally Retarded and the
National Institute on Mental Retardation National may refer to: Common uses * Nation or country ** Nationality – a ''national'' is a person who is subject to a nation, regardless of whether the person has full rights as a citizen Places in the United States * National, Maryland, ce ...
 – the national bodies for the local parent founded organizations. Wolfensberger's theory is now called
Social Role Valorisation Social role valorization (SRV) is a method for improving the lives of people who are of low status in society. (In countries of the British commonwealth, the third word in the term is usually spelled valorisation, but the abbreviation is the same. ...
. 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 which was court-mandated in some states and developed through major state and regional governmental offices. It was natural for them to support their sons and daughters who were creating their own movements, including the
Independent Living Independent living (IL), as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of disabled people working for Equal opportunity, equal opportunities, self-determination, and self-respect. ...
movement which had strong roots in the 1970s laws (e.g., Rehabilitation Act of 1973) and
self-advocacy Self-advocacy is the act of speaking up for oneself and one's interests. It is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil right ...
movement which obtained university parent-professional support in its inception.


Timeline


British Columbia

* 1952 – establishment of Vancouver Association for Retarded Children * 1955 – establishment of BC Association for Retarded Children by seven local parent associations. Now called the BC Association for Community Living. * 1958 – Canadian Association for Retarded Children founded (now Canadian Association for Community Living –CACL) * 1981 – International Year of Disabled Persons * 1982 – Stephen Dawson Supreme Court case establishes right of children with disabilities to receive medical care * 1984 – Tranquille blockade * 1985 – closure of Tranquille Institution * 1986 – Family Support Institute founded * 1987 – Closure of world's largest state-supported institution:
Willowbrook State School Willowbrook State School was a state-supported institution for children with intellectual disabilities in the Willowbrook neighborhood of Staten Island in New York City, which operated from 1947 until 1987. The school was designed for 4,000, ...
, 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 * 1989 – Establishment of Planned Lifetime Advocacy Network (PLAN) * 1992 – Barb Goode first self advocate to address the United Nations General assembly * 1993 – new Adult Guardianship legislation * 1996 – closure of Glendale Institution * 1996 – closure of Woodlands Institution * 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


North America

*1949 – The AHRC New York City was founded. *2008 – F.A.M.I.L.Y Movement in Chicago founded.


References


Citations – books

* *


Journals

* * *


Web pages

* * * * {{Refend


External links


The Family Support Institute of British Columbia

Vela Microboard Association

Planned Lifetime Advocacy Network

Community Living Society of British Columbia

The British Columbia Association for Community Living

Vancouver Adaptive Snow Sports

Tetra Society of North America

CanAssist
University of Victoria The University of Victoria (UVic) is a public research university located in the municipalities of Oak Bay, British Columbia, Oak Bay and Saanich, British Columbia, Canada. Established in 1903 as Victoria College, British Columbia, Victoria Col ...

Communitas Supportive Care Society
Disability rights organizations Developmental disabilities History of disability