Independent living (IL), as seen by its
advocates, is a
philosophy, a way of looking at
society
A society is a group of individuals involved in persistent social interaction, or a large social group sharing the same spatial or social territory, typically subject to the same political authority and dominant cultural expectations. Soci ...
and
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, developmental, intellectual, mental, physical, ...
, and a worldwide movement of disabled people working for
equal opportunities
Equal opportunity is a state of fairness in which individuals are treated similarly, unhampered by artificial barriers, prejudices, or preferences, except when particular distinctions can be explicitly justified. The intent is that the important ...
,
self-determination, and
self-respect
Self-esteem is confidence in one's own worth or abilities. Self-esteem encompasses beliefs about oneself (for example, "I am loved", "I am worthy") as well as emotional states, such as triumph, despair, pride, and shame. Smith and Mackie (2007) d ...
. In the context of
eldercare
Elderly care, or simply eldercare (also known in parts of the English-speaking world as aged care), serves the needs and requirements of senior citizens. It encompasses assisted living, adult daycare, long-term care, nursing homes (often call ...
, independent living is seen as a step in the continuum of care, with
assisted living
An assisted living residence or assisted living facility (ALF) is a housing facility for people with disabilities or for adults who cannot or who choose not to live independently. The term is popular in the United States, but the setting is si ...
being the next step.
In most countries, proponents of the Independent Living Movement claim preconceived notions and a predominantly
medical view of disability contribute to negative attitudes towards people with disabilities, portraying them as sick, defective and deviant persons, as objects of professional intervention, or as a burden for themselves and their families. These images have consequences for disabled people's opportunities for raising families of their own, getting
education
Education is a purposeful activity directed at achieving certain aims, such as transmitting knowledge or fostering skills and character traits. These aims may include the development of understanding, rationality, kindness, and honesty ...
and
work
Work may refer to:
* Work (human activity), intentional activity people perform to support themselves, others, or the community
** Manual labour, physical work done by humans
** House work, housework, or homemaking
** Working animal, an animal t ...
, which may result in persons with disabilities living in poverty. The alternative to the Medical Model of Disability is the
Social Model of Disability
The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functionings. The social mode ...
.
With the rise in Senior population, Independent Living facilities have risen in popularity as an option for aging citizens.
History in USA
The Independent Living Movement grew out of the
disability rights movement, which began in the 1960s. The IL Movement works at replacing the
special education
Special education (known as special-needs education, aided education, exceptional education, alternative provision, exceptional student education, special ed., SDC, or SPED) is the practice of educating students in a way that accommodates th ...
and rehabilitation experts' concepts of integration,
normalization and
rehabilitation
Rehabilitation or Rehab may refer to:
Health
* Rehabilitation (neuropsychology), therapy to regain or improve neurocognitive function that has been lost or diminished
* Rehabilitation (wildlife), treatment of injured wildlife so they can be retur ...
with a new
paradigm developed by people with disabilities themselves. The first Independent Living ideologists and organizers were people with extensive disabilities (e.g.,
Ed Roberts,
Hale Zukas,
Judith Heumann
Judith Ellen "Judy" Heumann (born December 18, 1947) is an American disability rights activist. She is recognized internationally as a leader in the disability community. Heumann is a lifelong civil rights advocate for people with disabilities. ...
,
Peg Nosek
Margaret Ann "Peg" Nosek (January 25, 1952 – November 21, 2020) was an American academic and disability rights activist based in Houston, Texas.
Early life and education
Nosek was born in Schenectady, New York, the daughter of Stanley Mich ...
, Beverly Chapman,
Lex Frieden
Lex Frieden (born March 5, 1949) is an American educator, researcher, disability policy expert and disability rights activist. Frieden has been called "a chief architect of the Americans with Disabilities Act." He is also regarded as a founder and ...
) and of course, early friends and collaborators in the 1970s (Julie Ann Racino) and university and government supporters throughout the 1980s and 1990s. Ed Roberts was a quadriplegic who dealt with discrimination in many different aspects of his life. His fight for acceptance in schools, however, is what Roberts is most well known for. In high school, Roberts was stopped from graduating because he could not complete his gym requirement, as he was paralyzed and spent most of his time in an
iron lung
An iron lung is a type of negative pressure ventilator (NPV), a mechanical respirator which encloses most of a person's body, and varies the air pressure in the enclosed space, to stimulate breathing.Shneerson, Dr. John M., Newmarket Genera ...
.
His biggest educational challenge came when he was accepted at college. After struggling to get accepted, the UCBerkeley refused to give Roberts financial aid. He then sued Berkeley for access and integration. Although he won the case, Roberts was housed in school's infirmary instead of the dorms. As others with disabilities started attending the school and living in the infirmary, an activist group called the Rolling Quads was formed. They ended up starting the Disabled Students' Program, a resource for those with disabilities that was run by people with disabilities.
This program led to the first independent living center in America being made, the Berkeley Center for Independent Living. These centers flourished across the United States and are a huge part of why Ed Roberts was so instrumental in the start of the Independent Living Movement. As well, a major project in Berkeley, California led by Roberts and others at the Center for Independent Living led to curb cuts up and down Telegraph and Shattuck Avenues creating an extensive path of travel. Following this, the value of curb cuts was promoted more strongly and their installment was often made on a voluntary basis by municipal authorities and developers.
The movement's message seems most popular among people whose lives depend on assistance with the activities of daily living and who, in the view of the IL Movement, are most exposed to custodial care,
paternalistic
Paternalism is action that limits a person's or group's liberty or autonomy and is intended to promote their own good. Paternalism can also imply that the behavior is against or regardless of the will of a person, or also that the behavior expres ...
attitudes and control by professionals. , independent living centers are codified in law throughout the US, and offer a variety of "professional services" (i.e., independent living) under government payment structures in the US.
Philosophy
The Independent Living philosophy postulates that people with disabilities are the best experts on their needs, and therefore they must take the initiative, individually and collectively, in designing and promoting better solutions and must organize themselves for political power. Besides de-professionalization and self-representation, the Independent Living ideology comprises de-medicalization of disability, de-institutionalization and cross-disability (i.e. inclusion in the IL Movement regardless of diagnoses).
In the Independent Living philosophy, people with disabilities are primarily seen as citizens and only secondarily as consumers of healthcare, rehabilitation or social services. As citizens in democratic societies, the IL Movement claims, persons with disabilities have the same right to participation, to the same range of options, degree of freedom, control and self-determination in everyday life and life projects that other citizens take for granted. Thus, IL activists demand the removal of infrastructural, institutional and attitudinal barriers and the adoption of the
Universal Design
Universal design is the design of buildings, products or environments to make them accessible to people, regardless of age, disability or other factors. It addresses common barriers to participation by creating things that can be used by the ma ...
principle. Depending on the individual's disability, support services such as
assistive technology, income supplements or personal assistance are seen as necessary to achieve equal opportunities. As emphasized by the IL Movement, needs assessment and service delivery must enable users to control their services, to freely choose among competing service providers and to live with dignity in the community. Cash benefits or
Direct Payments The Direct Payments scheme is a UK Government initiative in the field of Social Services that gives users money directly to pay for their own care, rather than the traditional route of a Local Government Authority providing care for them. The Cabin ...
are favored by IL activists over services in kind in terms of the outcomes for users' quality of life and cost-efficiency.
Over the years, the IL Movement has spread from
North America to all continents, adapting itself to and getting enriched by different cultures and economic conditions in the process. A considerable body of research, training materials and examples of good practice exists on such themes as transition from institutional to community living, transition from school to employment or self-employment, community organizing and advocacy, disability culture, girls and women with disabilities as well as disability and development. Supporting the movement and utilizing its work has become an important ingredient of many countries' social policy.
History in Canada
Canada's history of independence, home living, and the independent living movement can be traced back to the industrial revolution of the 19th century.
The industrial revolution precipitated rapid changes in the structure of society and the paid and unpaid labour economies.
The distribution of labour changed when farm workers and their families, replaced by technology on farms, migrated from small rural communities to large urban centres in search of gainful employment in industry.
The redistribution of paid agricultural labour to industry created a shortage of unpaid domestic care for disabled and dependent persons whose caregivers also became occupied with paid industrial labour.
The taken-for-granted economy of care (previously unpaid and supported by families and small rural communities) was disrupted, and industrialised communities suffered ballooning levels of homelessness and poverty as a consequence of an industrialised social structure.
Urban communities pushed governments for an ethical solution to the problem of uncared for disabled and dependent persons.
Provincial governments responded by building and funding medical institutions, however, institutional care was deeply flawed.
Institutionalised care created a paternalistic and segregated system that medicalised the identities of disabled and dependent persons and actively participated in the abuse of their human rights.
In the late 20th century, a social movement called the independent living movement fought to re-identify disabled and dependent persons as people with beliefs, values, dreams, and identities that extended beyond their medical diagnoses.
The overarching goal of the movement was to gain choice and control for dependent and disabled persons in the delivery of health and social care through state-supported community re-integration and care.
The independent living movement found significant support for
deinstitutionalisation
Deinstitutionalisation (or deinstitutionalization) is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. In the lat ...
through another ideological movement known as
neoliberalism
Neoliberalism (also neo-liberalism) is a term used to signify the late 20th century political reappearance of 19th-century ideas associated with free-market capitalism after it fell into decline following the Second World War. A prominent fa ...
.
Neoliberal thinkers oppose state interventions such as institutional care, promoting competitive market-based care delivery systems as cost-effective solutions to care for dependent and disabled persons.
With support from both movements, community care gained popularity as a moral and cost-effective alternative to institutional care.
Deinstitutionalisation coincided with an economic downturn in the 1980s.
The goals of the independent living movement - choice, control, and quality care - were essentially co-opted by neoliberal ideals of cost-control, self-sufficiency, and minimalist state intervention.
Deinstitutionalisation occurred alongside health and welfare service restructuring in a concerted effort to reduce public spending and improve the efficiency of formal care.
Service reductions were justified by neoliberal beliefs that all people ''ought'' ''to be'' independent, or at least have families that could provide support.
Community care has been structured as a compromise between neoliberal values and the lived realities of disabled and dependent persons of the independent living movement.
Home care, or home-based community care, came into effect in the 1980s in most Canadian Provinces as one policy solution to bridge the gap between institutional and community care.
The transition is ongoing and contentious. Home care is not covered under the 1984
Canada Health Act
The ''Canada Health Act'' (CHA; ''french: Loi canadienne sur la santé'') is a statute of the Parliament of Canada, adopted in 1984, which establishes the framework for federal financial contributions to the provincial and territorial health in ...
, and the provincial and federal governments tend to squabble over funding.
All levels of government are pressured to limit spending while maintaining equitable and accessible services for disabled and dependent persons.
The result is a fragile system of provincially run community care services that ration medical care while avoiding the complex social issue of long-term community care reform.
Canadian policymakers talk about a social model of disability and typically recognise that this model is preferred by disabled persons, however, the policy reality of independent living falls closer to a model that combines biomedical and neoliberal ideologies while neglecting social and environmental determinants of ability. Independent living remains difficult for many people and institutionalisation is offered as an ongoing practical solution to meeting care needs. Noticeable in the ideological push for independent living is the marketisation of institutional care as independent living in 21st century Canada.
Funding is through a decentralised mix of publicly paid, private-for-profit, and private-not-for-profit systems.
Beyond home care, community care is offered through a variety of service delivery models including supportive living, assisted living, and long-term care.
These newer forms of institutional care attempt to maximise independent living while minimising care provided, both to support disabled and dependent person's identified needs and to control costs in the formal care economy.
Unmet needs of deinstitutionalised care-dependent people may be absorbed by families and communities via the unpaid care economy,
into existing systems of acute and primary care, or be left unaddressed.
In Germany
In the 1970s/1980s, in
Germany
Germany,, officially the Federal Republic of Germany, is a country in Central Europe. It is the second most populous country in Europe after Russia, and the most populous member state of the European Union. Germany is situated betwe ...
, the autonomous
disability rights movement, also called the cripples movement, claimed for themselves the word ''cripple'' in the sense of a
reappropriation
In linguistics, reappropriation, reclamation, or resignification is the cultural process by which a group reclaims words or artifacts that were previously used in a way disparaging of that group. It is a specific form of a semantic change (i.e. ...
.
The ''cripple tribunal'' in
Dortmund on 13 December 1981 was one of the main protest actions of the autonomous German disability movement (in confrontation with the established disability assistance) against human rights abuses in
nursing homes and
psychiatric hospitals
Psychiatric hospitals, also known as mental health hospitals, behavioral health hospitals, are hospitals or wards specializing in the treatment of severe mental disorders, such as schizophrenia, bipolar disorder, eating disorders, dissociative ...
, and as well against deficiencies of the local public-transport.
Analogous to the
Russell Tribunal
The Russell Tribunal, also known as the International War Crimes Tribunal, Russell–Sartre Tribunal, or Stockholm Tribunal, was a private People's Tribunal organised in 1966 by Bertrand Russell, British philosopher and Nobel Prize winner, and ...
by
Amnesty International, the ''cripple tribunal'' denounced human rights violations of disabled people.
In Europe
In 1989 over 80 disabled persons and supporters coming from the Independent Living movement gathered in Strasbourg, France for a conference on personal assistance. The conference was funded by the German Green party and was an opportunity for members of the Independent Living movement to meet. This meeting resulted in the founding of ENIL – Th
European Network on Independent Living(ENIL). This network includes members from the
European Union
The European Union (EU) is a supranational political and economic union of member states that are located primarily in Europe. The union has a total area of and an estimated total population of about 447million. The EU has often been de ...
and its neighbors. ENIL promotes Independent Living at the European level but also at national and regional levels. ENIL notes that the
Social Model of Disability
The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functionings. The social mode ...
is central to the philosophy of many disabled people's organisations (DPOs) in Europe.
Centers for Independent Living
In 1972, the first Center for Independent Living was founded by disability activists, led by
Ed Roberts, in
Berkeley, California
Berkeley ( ) is a city on the eastern shore of San Francisco Bay in northern Alameda County, California, United States. It is named after the 18th-century Irish bishop and philosopher George Berkeley. It borders the cities of Oakland and E ...
. These Centers were created to offer
peer support
Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other. It commonly refers to an initiative consisting of trained supporters (although it can be provided by peers without training), and can ...
and
role modeling, and are run and controlled by persons with disabilities.
According to the IL approach, the example of a peer, somebody who has been in a similar situation, can be more powerful than a non-disabled professional's interventions in analyzing one's situation, in assuming responsibility for one's life and in developing coping strategies.
According to the IL Movement, with peer support, everyone – including persons with extensive
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 ...
– can learn to take more initiative and control over their lives. For example, peer support is used in Independent Living Skills classes where people living with their families or in institutions learn how to run their everyday lives in preparation for living by themselves.
There is a fundamental set of services (Core Services) found in all of the Centers, but there is some variation in the programs that are offered, the funding sources, and the staffing, among other things. Depending on the public services in the community, Centers might assist with housing referral and adaptation, personal assistance referral, or
legal aid. Typically, Centers work with local and regional governments to improve infrastructure, raise awareness about disability issues and lobby for
legislation that promotes equal opportunities and prohibits
discrimination. Effective centers have proven to be in states like California, Massachusetts, New York, Pennsylvania, and Illinois.
In the UK, the
British Council of Organisations of Disabled People The British Council of Organisations of Disabled People (BCODP) was a radical national voice of disabled people for legal, social and cultural change in Britain from 1981 to 2017, with a high profile in the 1980s and 1990s.
Origins
BCODP was foun ...
(BCODP, 1981–2017) started the
National Centre for Independent Living (NCIL, 1989–2011) as a project, which became a spin-out independent organisation in the early 2000s before merging with two other organisations to form
Disability Rights UK
Disability Rights UK (DR UK) is a UK pan-disability charity which was set up with the aim of representing the needs and expectations of disabled people in the UK. Disability Rights UK was formed as a result of several disability charities mergin ...
in January 2012. All these organisations subscribe to the
Social Model of Disability
The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functionings. The social mode ...
.
See also
*
Accessibility
*
Aging in place
*
Camp Jened
Camp Jened was a summer camp for disabled people in the state of New York (state), New York that became a springboard for the disability rights movement and Independent living, independent living movement in the United States. Many campers and c ...
*
Dignity of risk
*
Disability rights movement
*
Independent senior living
Independent senior living communities (also known as retirement communities, senior living communities or independent retirement communities) are housing designed for seniors 55 and older.
Independent senior living communities commonly provide apa ...
*
Intellectual disability
Intellectual disability (ID), also known as general learning disability in the United Kingdom and formerly mental retardation, Rosa's Law, Pub. L. 111-256124 Stat. 2643(2010). is a generalized neurodevelopmental disorder characterized by signif ...
*
List of disability rights activists
A disability-rights activist or disability-rights advocate is someone who works towards the equality of people with disabilities. Such a person is generally considered a member of the disability-rights movement and/or the independent-living mo ...
*
Mainstreaming (education)
Mainstreaming, in the context of education, is the practice of placing students with special education needs in a general education classroom during specific time periods based on their skills. To clarify, this means students who are a part of ...
*
Occupational therapy
*
Person-centred planning
Person-centred planning (PCP) is a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been a ...
*
Post-Polio Health International Post-Polio Health International (PHI) is a relatively new name for a non-profit organization that officially began its work in 1960. For many years it was known in medical, rehabilitation, and disability circles variously as GINI, or the Internation ...
*
Self-advocacy The term self-advocacy, which means speaking up for oneself and one's interests, 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 ...
*
Social model of disability
The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functionings. The social mode ...
*
Timeline of disability rights in the United States
This disability rights timeline lists events relating to the civil rights of people with disabilities in the United States of America, including court decisions, the passage of legislation, activists' actions, significant abuses of people with di ...
*
Timeline of disability rights outside the United States
This disability rights timeline lists events outside the United States relating to the civil rights of people with disabilities, including court decisions, the passage of legislation, activists' actions, significant abuses of people with disabilit ...
*
Visitability
Visitability is the design approach for new housing such that anyone who uses a wheelchair or other mobility device should be able to visit. A social visit requires the ability to get into the house, to pass through interior doorways, and enter a ...
– social integration beyond independent living
References
*
External links
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