Independent Life Movement: what it is and how it has transformed society
The Independent Life Movement groups different struggles for the recognition of functional diversity and for the guarantee of their civil rights. Broadly speaking, the Independent Life Movement subscribes to a social model of disability, in which the latter is understood as a situation (not an individual medical condition), where a person interacts with a series of social barriers.
The latter was later articulated with the concept of "functional diversity" that aims to break out of the traditional association between "diversity" and "lack of capacity". In this article we will do a brief review of the history of the Independent Life Movement , paying attention to the repercussions it has had in promoting the quality of life of people with disabilities.
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Independent Life Movement: what it is, beginnings and repercussions
In the year 1962, the prestigious University of Berkeley in the United States, accepted for the first time a student with disabilities, specifically in courses of administration and law. His name was Ed Roberts, he had had polio at the age of fourteen and as a consequence a neuromuscular paralysis, an issue that led him to require a need for important support. Thanks to the fact that he was able to satisfy this need, in large part because of the accompaniment of his mother, Ed Roberts soon became an important activist and militant for the civil rights of people with disabilities.
When he began his studies, Ed Roberts had to find a residence that suited his medical conditions, but he did not see the need for his room to become a hospital ward. Given the offer of the director of the health service of the university to allocate a special room at the hospital in Cowell ; Ed Roberts accepted, as long as the space was treated as a place for dormitories and not as a medical center.
The authorities accepted and this set an important precedent for other people who also had some medical condition that they wanted to be treated not only for medicine. Likewise, Ed was gaining participation in other environments, and even helped to reform many of the physical spaces, inside and outside the university, to make them more accessible .
A large community of activists for independent living was created, who inaugurated, among other things, the first Center for Independent Living (CIL) at the University of Berkeley. Pioneer place in generating more community models to meet the different needs that are specific to human diversity.
Nothing about us, without us
The Independent Living Movement made it visible that understanding disability from the more traditional biomedical model had the consequence that interaction with diversity and the provision of social services will be carried out under the same logic. That is to say, under the idea that there is a person who is "sick", who has little autonomy , as well as limited capabilities to participate in society. And last, society, remained as an external entity and alien to these limitations.
In other words, it was favoring the stigmatization of diversity , through stereotypes such as that the person in a situation of disability can not study, can not work or can not take care of himself; which finally had serious limits in accessing different spheres of social life.
Not only that, if they were not generating very important research to intervene on different vital conditions. But, these investigations and interventions were leaving aside people with disabilities themselves, that is, their needs, interests, abilities; and everything that defines them beyond a condition that can be explained by medicine.
Then there is a motto that has accompanied the movement, and that has even moved to other movements, which is "Nothing about us without us". At the same time, it became explicit that an independent life is not a solitary life, that is, that there is a need for interdependence and in many cases there is an important need for support, but that it has to be satisfied without sacrificing the autonomy of the person with disability .
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Background and other social movements
As we have seen, the Independent Living Movement arises as a reaction to the dehumanization of the process that historically has characterized the traditional medical model . And it also emerges as a struggle for the need for civil rights and for equal opportunities for social participation.
One of the most immediate antecedents of the Independent Living Movement is that Ed Roberts was admitted by the University of Berkeley two years before the latter became the cradle of the movement for freedom of expression, which among other things helped to empower different Causes.
In the same context there were other struggles for equal opportunities in the United States. Movements for the rights of African-American people, along with feminist movements, were gaining strength. For their part, people with disabilities noted that, As with other minorities, they were denied access to the most basic services and social benefits, for example, education, employment, transportation, housing, and so on.
A paradigm shift
From the struggles of the Independent Life Movement different principles were generated. For example, the promotion of human and civil rights, mutual aid, empowerment , responsibility for one's own life, the right to take risks and life in the community (Lobato, 2018).
We summarize the above, taking as a reference the document by Shreve, M. (2011).
1. From patients to users
People with disabilities were for the first time considered as users of the services, rather than as patients, and later as clients, all in line with the transformation in the provision of social services that took place in that context.
The latter helped, little by little, to convey the idea that these people can be active agents in their own situation, as well as in making decisions about the services and products that best suit their support needs.
2. Empowerment and mutual aid groups
The previous thing had like consequence that the people in situation of disability began to group themselves and to leave the roll of ill. Then mutual help groups were created, where the protagonists were people with disabilities, and no longer the expert medicine.
Without the latter ceasing to be considered as one of the supports that are necessary). The latter favored that both persons with disabilities, as professionals, take other positions and new specialties more focused on accessibility than on rehabilitation will be created .
3. Impact on institutions
The people in a situation of disability made it known that medical and pharmacological intervention is very important, however, it is not enough or in all cases necessary. From here, the care paradigm moved from medicalization to personal assistance, where the person with a disability take a more active role .
In the same sense, especially in the case of people with diagnoses of mental disorder, it became possible to begin a process of psychiatric demedicalization and deinstitutionalization, where gradually different violations to the human rights that took place in these spaces became visible. From here, the foundations have been laid to generate and promote more community models and less segregationist .
Beyond the United States
The Independent Life Movement soon moved to different contexts. In Europe, for example, I started in the 80s by initiating British activists who had been in the United States during the development of movement. From there, different forums have been created in many countries, which have significantly impacted the policies and paradigm of rights in relation to functional diversity.
However, given that there are not the same resources or the same needs everywhere, all the above has not applied to all contexts. The community model and the rights paradigm coexist with strong processes of stigmatization and segregation of disability. Fortunately it is a movement that continues active and there are many people who have continued working for this to change.
Bibliographic references:
- Lobato, M. (2018) Independent Life Movement. Independent Life Valencian Community. Retrieved June 28, 2018. Available at //vicoval.org/development-movement-/.
- Shreve, M. (2011). The Independent Living Movement: History and Philosophy to Implementation and Practice. Social Chance for the Integration and Inclusion of All People with Disabilities into Society. Retrieved June 28, 2018. Available at //www.ilru.org/sites/default/files/resources/il_history/IL_Movement.pdf.
- García, A. (2003). The independent living movement. International experiences Luis Vives Foundation: Madrid.
