25 years of Independent Living in Sweden
Speech by Adolf Ratzka, Director Independent Living Institute, 2008.11.28.
The Independent Living movement and social policy
Social policy is not created by those living under it but by politicians and administrators. The Swedish Independent Living movement is an exception: we made social policy, we change municipal home help assistance to personal assistance under our own direction. In theory, help to self-help was spoken about already during the 70s but in practice only ready-made package solutions existed – one size fits all – for persons with extensive disabilities: municipal home care, group dwellings and cluster housing with services existed with the consent of the traditional disability organizations. Their, at that time, mostly non-disabled representatives and officials did obviously not have to live there themselves.
Today one is amazed by the oppression society in all its well-meaning subjected persons with extensive disability to. Against the fourfold public monopoly – in the shape of needs assessor, financer, service provider and quality evaluator – the individual was totally disempowered. In contrast to the traditional disability organizations, which advocated improvements through information and education of the home help assistants, the Independent Living movement realized the opportunity to development outside the existing system, by making a quantum leap over the defenders of status quo: the principle of direct payments guided by demand instead of supply provides the individual with power – not the apparatus of authority. It turns earlier objects within the apparatus of care into customers at a market, creates employment opportunities, promote choice, competition, cost effectiveness and not at least life quality for the individuals.
When we demanded to take the matter into our own hands and arrange our assistance ourselves, we were accused of privatization. Are civil servants within the social service’s hierarchy under control of parliamentary democracy better judges of when I am going to the toilet, with whose help, how and where? Should not such decisions remain private regardless of what regime is advocated? We were accused of elitism and lacking solidarity. Sure, we were the elite of “the weakest among the weak”, which politicians love to call us. Through mutual peer support, training in work management and exchange of experience we helped each other along on the road from object to subject, from victims of others arbitrariness to masters of our own lives. Our pilot project became a model for the national assistance allowance which has become the saving of tens of thousands of persons in Sweden and example inspiring hope to millions abroad.
Persons with disabilities and their status in society has been the object of a number of different approaches. We have had the medical and the charity model, in Great Britain the progressive disability movement developed the social model. My view is that the approach to persons with disability best suited to the philosophy of Independent Living is the citizen model. According to this, we are citizens with the same obligations and rights as others. It is not possible to enjoy rights without fulfilling ones obligations. The role of victim is convenient but counterproductive. Instead of appealing to others we have to take the initiative. This applies to our personal lives, it also applies to our movement. We are the best experts on our needs. It is an obligation. We can not sit back and let us satisfy with reacting to the government’s or others’ actions and proposals. We have to stay one step ahead, have to raise issues and act proactively. So long we do not develop and present solutions to our needs, so long we will receive the solutions others consider reasonable for us, solutions which marginalize and oppress us – home help services instead of personal assistance, special classes for pupils with physical disabilities [“RH-klasser”] instead of ordinary classes, special transport instead of accessible public transport in the shape of taxi, bus and subway. There are many examples, we have an important role in the building of society.
As citizens in a democracy we expect freedom of choice not only on the day if election but every day. Other citizens have freedom of choice when it is a matter of products and services. Monopoly, private or public, results in higher costs for society and/or lower quality and few satisfied customers. This is why, within the EU one has started to break down earlier public monopolies within for example telecommunications and electricity. Persons with disabilities would also benefit from this type of development concerning products and services relevant to us, a development which transforms earlier monopolies into open markets through direct payments. The principle of direct payments should also be able to be used to the benefit of our group and society on areas such as technical aids services and special transport which today often make us more dependent instead of independent.
We have much left to do – in Sweden and internationally. It is going to be great fun
[translated to english from swedish text]