Dilyana Deneva
Do the words “Independent Living” mean anything particular to you? Why do you think the words’ first letters are capital? The answer is simple, yet hard for many people to be understood. Independent Living is the name of a movement, of a philosophy which is a prerequisite for an equal society.
The Independent Living Movement was launched in 1960s by a group of disabled people in the USA, who had the determination and courage to change the paradigm with regards to the concept of disability at that time. The term ‘special education’ was prevailing then – a concept that some might think is what a disabled child or adolescent needs, but in reality is a form of segregation. Disabled people are not special because of their physical condition. They can be special because of their personal characteristics, their talents, achievements and interests. They can be and have the right to be ordinary people as well.
However, the medical model of disability sees the person first and foremost as a person with diagnosis. The focus is put on the problems that arise from the disability, the things that one cannot do due to their disability. This is what wise people like Ed Roberts and Judy Heumann in the USA and Adolf Ratzka in Europe struggled to change. As Independent Living ideologists, they understood the importance of the values of self-determination, self-representation, de-institutionalisation, choice and control if we are to live in a world of equality and respected human rights.
Aodlf Ratzka gave a simple, yet precise definition of Independent Living: “Independent Living is having the same range of options and same degree of self-determination taken for granted by non-disabled people”. In other words, it is the right to live ordinary life, nothing more, nothing less.
This is what the social model of disability proclaims – it sees the person first in its essence – character, personality, individuality and abilities. Everybody is good at something, as long as she/he is given the appropriate environment to develop their potential. The ‘disability’ does not come from the impairment (be it physical, sensory, intellectual or psychological). It is created by the inaccessible environment. This is why nowadays lots of disability rights activists do not use the term ‘person with a disability’, but a ‘disabled person’ instead – because the person is ‘disabled’ by the environment. The origins of the approach can be traced again to the 1960s. However, there is still long way to go until all countries and societies fully apply it.
For an equal life, everybody should have access to society. Too often this is not the case for disabled people who live isolated life – because they cannot go out of their homes, because they cannot reach the places where everybody else goes, or even in some cases – because they are locked in institutions. For a true access to society, the need of social services, personal assistance, barrier-free environment, housing options and technical aids has to be satisfied. This means that political will is required these factors to be provided in a country, no matter whether one lives in a rural or urban area.
One of the main tools which the Independent Living Movement uses is the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), and in particular its Article 19. It sets out the right to choose where, with whom and how to live one’s life. This allows for self-determination upon which Independent Living is based. The Convention and its Optional Protocol were adopted on 13 December 2006 at the United Nations Headquarters in New York, and was opened for signature on 30 March 2007. It was intended as a human rights instrument with an explicit, social development dimension. Up to now 174 countries have ratified it, but we witness a different level of implementation worldwide. We will be able to see its goals achieved only when the ideas of human rights and equality standing behind the CRPD are fully understood by societies and there is political will changes of the status quo to be made.
I wrote this article with the intention to raise awareness on a crucially important topic for all societies – if we want to live in a world of equal opportunities and respect of differences, a world of inclusion – we need to learn how to accept the differences. Only when we realise that beauty of life is in its diversity, we can unite and stand strong behind the ideals of the Independent Living philosophy. I do believe that this would be a step forward in evolution for us, humans.
Dilyana Deneva
The contents of this article are the sole responsibility of the author, and can under no circumstances be regarded as reflecting the position of ALDA and the European Union.
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