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 and work, which may result in persons with disabilities living in poverty. The alternative to the Medical Model of Disability is the Social Model of Disability.
With the rise in Senior population, Independent Living facilities have risen in popularity as an option for aging citizens.[1]
History in USA
The Independent Living Movement[2] grew out of the disability rights movement, which began in the 1960s. 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.[3] The first Independent Living ideologists and organizers were people with extensive disabilities (e.g., Ed Roberts, Hale Zukas, Judith Heumann, Peg Nosek, Beverly Chapman, Lex Frieden) 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[4] 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.[5] 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.[5] This program led to the first independent living center in America being made, the Berkeley Center for Independent Living.[6] 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.[7]
Philosophy
"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."[8]
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.[9] The industrial revolution precipitated rapid changes in the structure of society and the paid and unpaid labour economies.[9] 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.[9] 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.[9] 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.[9]
Urban communities pushed governments for an ethical solution to the problem of uncared for disabled and dependent persons.[9] Provincial governments responded by building and funding medical institutions, however, institutional care was deeply flawed.[10] 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.[11]
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.[10] 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.[10]
The independent living movement found significant support for deinstitutionalisation through another ideological movement known as neoliberalism.[12] 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.[12][13] With support from both movements, community care gained popularity as a moral and cost-effective alternative to institutional care.[14]
Deinstitutionalisation coincided with an economic downturn in the 1980s.[10] 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.[12] Deinstitutionalisation occurred alongside health and welfare service restructuring in a concerted effort to reduce public spending and improve the efficiency of formal care.[13] Service reductions were justified by neoliberal beliefs that all people oughtto be independent, or at least have families that could provide support.[13] 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.[13]
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.[14] The transition is ongoing and contentious. Home care is not covered under the 1984 Canada Health Act, and the provincial and federal governments tend to squabble over funding.[15][14] All levels of government are pressured to limit spending while maintaining equitable and accessible services for disabled and dependent persons.[15][14] 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.[15][14][11] 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.[15] Funding is through a decentralised mix of publicly paid, private-for-profit, and private-not-for-profit systems.[16][12] Beyond home care, community care is offered through a variety of service delivery models including supportive living, assisted living, and long-term care.[15][16]
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.[16] Unmet needs of deinstitutionalised care-dependent people may be absorbed by families and communities via the unpaid care economy,[13][16] into existing systems of acute and primary care, or be left unaddressed.[16]
In 1972, the first Center for Independent Living was founded by disability activists, led by Ed Roberts, in Berkeley, California. These Centers were created to offer peer support and role modeling, and are run and controlled by persons with disabilities.[18] 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 (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.[19]
Visitability – social integration beyond independent living
Related Research Articles
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, sensory, or a combination of multiple factors. Disabilities can be present from birth or can be acquired during a person's lifetime. Historically, disabilities have only been recognized based on a narrow set of criteria—however, disabilities are not binary and can be present in unique characteristics depending on the individual. A disability may be readily visible, or invisible in nature.
The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all people with disabilities.
Care in the Community is a British policy of deinstitutionalisation, treating and caring for physically and mentally disabled people in their homes rather than in an institution. Institutional care was the target of widespread criticism during the 1960s and 1970s, but it was not until 1983 that the government of Margaret Thatcher adopted a new policy of care after the Audit Commission published a report called 'Making a Reality of Community Care' which outlined the advantages of domiciliary care.
"The normalization principle means making available to all people with disabilities patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life or society." Normalization is a rigorous theory of human services that can be applied to disability services. Normalization theory arose in the early 1970s, towards the end of the institutionalisation period in the US; it is one of the strongest and long lasting integration theories for people with severe disabilities.
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 rights movements of the 1960s and 1970s, and is part of the disability rights movement. Today there are self-advocacy organizations across the world.
Deinstitutionalisation 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 late 20th century, it led to the closure of many psychiatric hospitals, as patients were increasingly cared for at home, in halfway houses and clinics, in regular hospitals, or not at all.
A group home, congregate living facility, care home, adult family home, etc., is a structured and supervised residence model that provides assisted living and medical care for those with complex health needs. Traditionally, the model has been used for children or young people who cannot live with their families or afford their own homes, people with chronic disabilities who may be adults or seniors, or people with dementia and related aged illnesses. Typically, there are no more than six residents, and there is at least one trained caregiver there 24 hours a day. In some early "model programs", a house manager, night manager, weekend activity coordinator, and four part-time skill teachers were reported. Originally, the term group home referred to homes of 8 to 16 individuals, which was a state-mandated size during deinstitutionalization. Residential nursing facilities, also included in this article, may be as large as 100 individuals in 2015, which is no longer the case in fields such as intellectual and developmental disabilities. Depending on the severity of the condition requiring one to need to live in a group home, some clients are able to attend day programs and most clients are able to live normal lifestyles.
Psychiatric rehabilitation, also known as psych social rehabilitation, and sometimes simplified to psych rehab by providers, is the process of restoration of community functioning and well-being of an individual diagnosed in mental health or emotional disorder and who may be considered to have a psychiatric disability.
The Tipping Foundation is a not-for-profit community organisation based in Victoria, Australia. The Tipping Foundation merged with House with No Steps in 2018, and is now known as Aruma.
Carers' rights are rights of unpaid carers or caregivers to public recognition and assistance in preventing and alleviating problems arising from caring for relatives or friends with disabilities. The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work. With an increasingly ageing population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers/caregivers as well.
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 to the current supported decisionmaking; increasing access to health care; developing real jobs; fighting stereotypes and reducing discrimination.
Deinstitutionalisation is the process of reforming child care systems and closing down orphanages and children's institutions, finding new placements for children currently resident and setting up replacement services to support vulnerable families in non-institutional ways. It became common place in many developed countries in the post war period. It has been taking place in Eastern Europe since the fall of communism and is now encouraged by the EU for new entrants. It is also starting to take hold in Africa and Asia although often at individual institutions rather than statewide. New systems generally cost less than those they replace as many more children are kept within their own family. Although these goals have been made internationally, they are actively being working towards as reform and new reforms are put into practice slowly as is fit for each country.
Social citizenship was a term first coined by T. H. Marshall, who argued that the ideal citizenship experience entails access to political, civil and social rights in a state. According to Marshall, social citizenship includes “the whole range from the right to a modicum of economic welfare and security to the right to share to the full in the social heritage and to live the life of a civilized being according to the standards prevailing in society”. Marshall’s concept of social policy has been critiqued by some scholars for being idealistic and only applicable to the participation of able-bodied white males.
Council for Canadians with Disabilities (CCD), formerly known as the Coalition of Provincial Organizations of the Handicapped (COPOH), was created by people with disabilities in 1976 to provide support for all people with disabilities who seek the opportunity to go to school, work, volunteer, have a family, and participate in recreational, sport and cultural activities. The CCD is a national human rights organization of people with disabilities working for an accessible and inclusive Canada. In the 1970s, the CCD became a permanent part of the disability rights movement and it became a fluid entity that includes people with a range of different disabilities. To manage the work that will lead to the achievement of this goal, CCD established the following Committees to guide their activities in key areas:
Human Rights Committee: Identifies Human Rights Committee issues of concern to persons with disabilities that could be addressed through law reform initiatives.
Social Policy Committee: Identifies Social Policy Committee issues of national concern to persons with disabilities.
Transportation Committee
International Development Committee: Provides advice to CCD National Council on reforms that would improve the effect of Canada's foreign aid and policy on persons with disabilities.
Access to Technology Committee.
The world's poor are significantly more likely to have or incur a disability within their lifetime compared to more financially privileged populations. The rate of disability within impoverished nations is notably higher than that found in more developed countries. Since the early 2010s there has been growing research in support of an association between disability and poverty and of a cycle by which poverty and disability are mutually reinforcing. Physical, cognitive, mental, emotional, sensory, or developmental impairments independently or in tandem with one another may increase one's likelihood of becoming impoverished, while living in poverty may increase one's potential of having or acquiring disability in some capacity.
Gunnar Dybwad (1909–2001) was an American professor and advocate for the rights of people with disabilities, particularly developmental disabilities. He is best known for his support for the social model of disability, reframing disability accommodations as a matter of civil rights, not medical treatment. The American Association on Intellectual and Developmental Disabilities gives out the Dybwad Humanitarian Award annually in his honor.
In Japan, a person with a disability is defined as: "a person whose daily life or life in society is substantially limited over the long term due to a physical disability or mental disability". Japan ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD) on 20 January 2014.
Disability affects many people in Zimbabwe in both rural and urban areas. In spite of services provided by the government, philanthropists and welfare agencies, people with disabilities and their families often face several barriers. Philanthropist, Jairos Jiri, started services for people with disability in Zimbabwe in the 1940s. He is regarded as the father or founder of disability work in Zimbabwe.
Sylvia Walker was a disability rights activist and professor with the School of Education at Howard University.
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