Independent Living Movement: What It Is And How It Has Transformed Society
The Independent Living Movement brings together different struggles for the recognition of functional diversity and the guarantee of their civil rights. Broadly speaking, the Independent Living Movement subscribes to a social model of disability, where 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,” which aims to move beyond the traditional association between “diversity” and “lack of capacity.” In this article we will a brief review of the history of the Independent Living Movement paying attention to the repercussions it has had on promoting the quality of life of people with disabilities.
Independent Living Movement: what it is, beginnings and repercussions
In 1962, the prestigious Berkeley University in the United States accepted a student with disabilities for the first time, specifically in administration and law courses. His name was Ed Roberts, he had had polio at the age of fourteen and as a consequence neuromuscular paralysis, an issue that led him to require significant support. Thanks to the fact that he was able to satisfy this need, largely due to the support of his mother, Ed Roberts soon became an important activist and activist for the civil rights of people with disabilities.
When he began his studies, Ed Roberts had to look for a residence that was suitable for his medical conditions, but he did not see the need for his room to be converted into a hospital ward. Given the offer of the director of the university’s health service to allocate a special room in Cowell’s hospital ; Ed Roberts accepted, as long as the space was treated as a dormitory and not a medical center.
The authorities accepted and this set an important precedent for other people who also had a medical condition that they wanted to be treated not only by medicine. Likewise, Ed was gaining participation in other environments, and even helped renovate many of the physical spaces, inside and outside the university, to make them more accessible
A large community of independent living activists was then created, who inaugurated, among other things, the first Center for Independent Living (CIL) at the University of Berkeley. Pioneering place in generating more community models to meet the different needs that are typical of human diversity.
Nothing about us, without us
The Independent Living Movement made visible that understanding disability from the most traditional biomedical model had the consequence that the interaction with diversity and the provision of social services would 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 capacities to participate in society. And the latter, society, remained 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 with a disability cannot study, cannot work or cannot take care of themselves; which ultimately resulted in serious limits to access different spheres of social life.
Not only that, but very important research was not being generated to intervene in different vital conditions. But, these investigations and interventions were leaving aside the people with disabilities themselves, that is, their needs, interests, abilities; and everything that defines them beyond a condition that can be explained by medicine.
A motto then emerges that has accompanied the movement, and that has even been transferred to other movements, which is “Nothing about us without us.” At the same time, it was made explicit that an independent life is not a solitary life, that is, there is a need for interdependence and in many cases there is an important need for support, but that must be satisfied without sacrificing the autonomy of the person with a disability
As we have seen, the Independent Living Movement emerged as a reaction to the dehumanization of the process that has historically characterized the traditional medical model And it also emerges as a fight 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 to the University of Berkeley two years before the latter became the cradle of the freedom of expression movement, 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 were gaining strength, along with feminist movements. For their part, people with disabilities noted that, As was the case with other minorities, they were denied access to the most basic services and social benefits, for example, education, employment, transportation, housing, etc.
A paradigm shift
Different principles were generated from the struggles of the Independent Living Movement. 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 community (Lobato, 2018).
Below we summarize the above, taking as reference the document by Shreve, M. (2011).
1. From patients to users
People with disabilities were for the first time considered as users of services, before 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 consequence of this was that people with disabilities began to group together and abandon the role of sick person. Mutual aid groups were then created, where the protagonists were people with disabilities, and no longer expert medicine.
Without the latter ceasing to be considered as one more of the supports that are necessary). The latter encouraged both people with disabilities and professionals to take other positions and New specialties more focused on accessibility than on rehabilitation will also be created
3. Impact on institutions
People with disabilities made it known that medical and pharmacological intervention is very important, however, it is not sufficient or necessary in all cases. From here, the care paradigm moved from medicalization to personal assistance, where the person with disabilities 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 demedicalization and psychiatric deinstitutionalization, where different violations of human rights that took place in these spaces gradually became visible. From here, the foundations have been laid to generate and promote more community and less segregationist models
Beyond the United States
The Independent Living Movement soon moved to different contexts. In Europe, for example, it began in the 1980s by British activists who had been in the United States during the development of the movement. From there, different forums have been created in many countries, which have significantly impacted policies and the rights paradigm in relation to functional diversity.
However, and given that there are not the same resources or needs everywhere, all of 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 to change this.
