Independent living
Encyclopedia
Independent living, as seen by its advocate
s, 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. In the context of eldercare, independent living is seen as a step in the continuum of care, with assisted living
being the next step.
In most countries, proponents of the IL 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, as a burden for themselves and their families, dependent on other people’s charity. These images, in the IL analysis, have consequences for disabled people's opportunities for raising families of their own, getting education
and work
, which, in turn, result in persons with disabilities making up a large portion of the poor in any country.
civil rights
and consumer movements of the late 1960s, the Independent Living Movement grew out of the Disability Rights Movement
, which began in the 1970s. The IL Movement works at replacing the special education
and rehabilitation experts’ concepts of integration, normalization
and rehabilitation
with a new paradigm
developed by people with disabilities themselves. The first Independent Living ideologists and organizers were people with extensive disabilities. Still, 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 attitudes and control by professionals.
In the Independent Living philosophy, disabled people 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 every day 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
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
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.
, in Berkeley, California
. These Centers were created to offer peer support
and role model
ing, 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 - 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 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.
Advocate
An advocate is a term for a professional lawyer used in several different legal systems. These include Scotland, South Africa, India, Scandinavian jurisdictions, Israel, and the British Crown dependencies of Jersey, Guernsey and the Isle of Man...
s, is a philosophy
Philosophy
Philosophy is the study of general and fundamental problems, such as those connected with existence, knowledge, values, reason, mind, and language. Philosophy is distinguished from other ways of addressing such problems by its critical, generally systematic approach and its reliance on rational...
, a way of looking at 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...
and society
Society
A society, or a human society, is a group of people related to each other through persistent relations, or a large social grouping sharing the same geographical or virtual territory, subject to the same political authority and dominant cultural expectations...
, and a worldwide movement of people with disabilities working for 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...
, self-respect and equal opportunities. In the context of eldercare, independent living is seen as a step in the continuum of care, with assisted living
Assisted living
Assisted living residences or assisted living facilities provide supervision or assistance with activities of daily living ; coordination of services by outside health care providers; and monitoring of resident activities to help to ensure their health, safety, and well-being.Assistance may...
being the next step.
In most countries, proponents of the IL Movement claim preconceived notions and a predominantly medical view of disability
Medical model of disability
The medical model of disability is a sociopolitical model by which illness or disability, being the result of a physical condition, and which is intrinsic to the individual , may reduce the individual's quality of life, and causes clear disadvantages to the individual.It is today specifically...
contribute to negative attitudes towards people with disabilities, portraying them as sick, defective and deviant persons, as objects of professional intervention, as a burden for themselves and their families, dependent on other people’s charity. These images, in the IL analysis, have consequences for disabled people's opportunities for raising families of their own, getting education
Education
Education in its broadest, general sense is the means through which the aims and habits of a group of people lives on from one generation to the next. Generally, it occurs through any experience that has a formative effect on the way one thinks, feels, or acts...
and work
Employment
Employment is a contract between two parties, one being the employer and the other being the employee. An employee may be defined as:- Employee :...
, which, in turn, result in persons with disabilities making up a large portion of the poor in any country.
History
With origins in the U.S.United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
civil rights
Civil rights
Civil and political rights are a class of rights that protect individuals' freedom from unwarranted infringement by governments and private organizations, and ensure one's ability to participate in the civil and political life of the state without discrimination or repression.Civil rights include...
and consumer movements of the late 1960s, the Independent Living Movement grew out of the Disability Rights Movement
Disability rights movement
The disability rights movement is the movement to secure equal opportunities and equal rights for people with disabilities. The specific goals and demands of the movement are: accessibility and safety in transportation, architecture, and the physical environment, equal opportunities in independent...
, which began in the 1970s. The IL Movement works at replacing the special education
Special education
Special education is the education of students with special needs in a way that addresses the students' individual differences and needs. Ideally, this process involves the individually planned and systematically monitored arrangement of teaching procedures, adapted equipment and materials,...
and rehabilitation experts’ concepts of integration, normalization
Normalisation (people with disabilities)
“The normalization principle means making available to all people with disabilities people patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society.”- Definition :...
and rehabilitation
Physical therapy
Physical therapy , often abbreviated PT, is a health care profession. Physical therapy is concerned with identifying and maximizing quality of life and movement potential within the spheres of promotion, prevention, diagnosis, treatment/intervention,and rehabilitation...
with a new paradigm
Paradigm
The word paradigm has been used in science to describe distinct concepts. It comes from Greek "παράδειγμα" , "pattern, example, sample" from the verb "παραδείκνυμι" , "exhibit, represent, expose" and that from "παρά" , "beside, beyond" + "δείκνυμι" , "to show, to point out".The original Greek...
developed by people with disabilities themselves. The first Independent Living ideologists and organizers were people with extensive disabilities. Still, 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 attitudes and control by professionals.
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, disabled people 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 every day 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
Universal design refers to broad-spectrum ideas meant to produce buildings, products and environments that are inherently accessible to both people without disabilities and people with disabilities....
principle. Depending on the individual’s disability, support services such as assistive technology
Assistive technology
Assistive technology or adaptive technology is an umbrella term that includes assistive, adaptive, and rehabilitative devices for people with disabilities and also includes the process used in selecting, locating, and using them...
, 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
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...
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
Americans with disabilities
Americans with disabilities comprise one of the largest minority groups in the United States. According to the Disability Status: 2000 - Census 2000 Brief approximately 20% of Americans have one or more diagnosed psychological or physical disability:...
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.
"Independent Living does not mean that we want to do everything by ourselves, do not need anybody or like to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and raise families of our own. We are profoundly ordinary people sharing the same need to feel included, recognized and loved." Dr. Adolf Ratzka, http://www.independentliving.org
Centers for Independent Living
In 1972, the first Center for Independent Living was founded by disability activists, led by Ed RobertsEd Roberts (activist)
Edward Verne Roberts was an American activist. He was the first student with severe disabilities to attend the University of California, Berkeley. He was a pioneering leader of the disability rights movement.-Early life:...
, in Berkeley, California
Berkeley, California
Berkeley is a city on the east shore of the San Francisco Bay in Northern California, United States. Its neighbors to the south are the cities of Oakland and Emeryville. To the north is the city of Albany and the unincorporated community of Kensington...
. These Centers were created to offer peer support
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, and can take a number of forms such as peer mentoring, listening, or counseling...
and role model
Role model
The term role model generally means any "person who serves as an example, whose behaviour is emulated by others".The term first appeared in Robert K. Merton's socialization research of medical students...
ing, 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 - 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 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
Legal aid
Legal aid is the provision of assistance to people otherwise unable to afford legal representation and access to the court system. Legal aid is regarded as central in providing access to justice by ensuring equality before the law, the right to counsel and the right to a fair trial.A number of...
. 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
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...
. Effective centers have proven to be in states like California, Massachusetts, New York, Pennsylvania, and Illinois.
See also
- Social model of disabilitySocial model of disabilityThe social model of disability is a reaction to the dominant medical model of disability which in itself is a Cartesian functional analysis of the body as machine to be fixed in order to conform with normative values...
- Aging in placeAging in placeAging in place is the ability to live in one's own home - wherever that might be - for as long as confidently and comfortably possible. Livability can be extended through the incorporation of universal design principles, telecare and other assistive technologies...
- AccessibilityAccessibilityAccessibility 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...
- Disability rights movementDisability rights movementThe disability rights movement is the movement to secure equal opportunities and equal rights for people with disabilities. The specific goals and demands of the movement are: accessibility and safety in transportation, architecture, and the physical environment, equal opportunities in independent...
- Post-Polio Health InternationalPost-Polio Health InternationalPost-Polio Health International , 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 International Polio Network, or the Rehabilitation Gazette...
- Intellectual disabilityIntellectual disabilityIntellectual disability is a broad concept encompassing various intellectual deficits, including mental retardation , deficits too mild to properly qualify as MR, various specific conditions , and problems acquired later in life through acquired brain injuries or neurodegenerative diseases like...
- Person Centred PlanningPerson Centred PlanningPerson-centred planning is a set of approaches designed to assist someone to plan their life and supports. It is used most often as a life planning model to enable individuals with disabilities or otherwise requiring support to increase their personal self-determination and improve their own...
- List of disability rights activists
- Self-advocacySelf-advocacySelf-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...
- Occupational TherapyOccupational therapyOccupational therapy is a discipline that aims to promote health by enabling people to perform meaningful and purposeful activities. Occupational therapists work with individuals who suffer from a mentally, physically, developmentally, and/or emotionally disabling condition by utilizing treatments...
- VisitabilityVisitabilityVisitability is an international movement to change home construction practices so that virtually all new homes, whether or not designated for residents who currently have mobility impairments, offer three specific accessibility features...
- Social Integration Beyond Independent Living - E-Inclusion