“Independent Living is the emancipatory philosophy and practice which empowers disabled people and enables them to exert influence, choice and control in every aspect of their life.”
Lots of people have made definitions of independent living. They all focus on a few key concepts: choice, control, freedom, equality.
One aim of independent living is to equalise the opportunities available to disabled people. Philip Mason expresses it as an ideal:
“Our dream was that disabled people would be enabled to fulfil their roles in terms of taking the opportunities society offers and meeting the responsibilities society requires.” (1)
John Evans expresses it as a freedom:
“The essence of Independent Living is the freedom to make decisions about your own life and to participate fully in your community.” (2)
The National Centre for Independent Living in the UK defines it as choice:
“Independent living for disabled people means being able to live in the way you choose, with people you choose. It means having choices about who helps you and the ways they help. It is not necessarily about doing things for yourself, it is about having control over your day to day life.” (3)
But independent living is more than an individual aim. It encompasses a change in social relations. It is both a philosophy and a practical approach. It brings disabled people together to work for civil and human rights. They espouse equal opportunities for everyone as well as self-determination for themselves. It is looking for a very simple aim:
“.…Independent Living means that disabled people want the same life opportunities and the same choices in every day life that their non-disabled brothers and sisters, neighbours and friends take for granted.” (4)
But this simple aim encompasses all of social and economic life. Being able to grow up alongside non disabled siblings, attending the , going to the neighbourhood school is a dream for many disabled young people today. But it is a dream that can become reality through the principles of independent living. Being able to use the same bus or get the same job as their friends is a dream for many disabled people today. Independent living says that this dream can be turned into real life, through collective action.
It is sometimes claimed that independent living is an individualistic philosophy, that the focus on supporting individual people ignores the wider social and economic pressures facing disabled people. This claim ignores the whole culture of independent living. Achieving the social aims of independent living requires collective action. Independent living is developed through the self-organisation of disabled people. The movement is based on collectively developed solutions to individually experienced barriers. The movement recognises that many disabled people will not manage to achieve independence on their own, that the system we live in puts too many obstacles in the way.
“The corner stone of Independent Living Philosophy is…control and choice….Systems advocacy is of ultimate importance because some choices for disabled people still need to be created.” (5) This recognition, that we need to create choices, is one of the reasons why disabled people have come together to set up their own organisations, including Centres for Independent Living.
Centres for Independent Living are always controlled by disabled people, they have a majority on the board, often all the voting members of the board are disabled people. This is not because of hostility to non disabled people. Rather, it is an expression of a necessary step towards independent living. Adolf Ratzka says: “disabled people need to be in charge of their own lives, need to think and speak for themselves without interference from others.” (6) This is as true in organisations as in individual life.
A group of disabled people thinking and speaking for themselves in the UK in the 1970s came up with a set of ideas they called the “Fundamental Principles of Disability. Later, disabled academic and activist Mike Oliver, presented these ideas as the “social model of disability”. The social model underpins the philosophy of independent living. Fundamental Principles describes disability as a specific form of social oppression. They make a distinction between “impairment” – the condition of body of mind – and “disability” – the social restrictions experienced.
“Disability is the disadvantage or restriction of activity caused by contemporary social organisation which takes little or no account of people who have impairments and thus excludes them from participation in the mainstream of social activities. Disability is a particular form of social oppression.” (7)
The document goes on to explain that disability must be tackled holistically. Although one of the biggest obstacles facing disabled people is poverty, it is not enough to focus on incomes. Although many disabled people are unemployed, it is not enough to focus on employment. All aspects of exclusion must be addressed. Fundamental principles also stresses the importance of disabled people taking control. It says that professionals, experts and others who seek to help must be committed to promoting that control. In other words, non disabled people do have a role to play, but only if they are prepared to share power, share resources and challenge exclusion.
This inclusive approach is central to the philosophy of independent living. The ideas contained in it have been made concrete in the work of Centres for Independent Living. Some Centres use the words “Inclusive Living” rather than “independent living” to emphasise this inclusive concept.
Using the social model to analyse need, seven “basic needs” of independent living were identified by Derbyshire CIL:
Information – to know what your options are
Peer Support – encouragement and guidance from other disabled people
Housing – a suitable place to live
Equipment - technical aids, to reduce unnecessary dependence on others
Personal Assistance – human help with everyday tasks
Transport – to get where you need to be
Access to the Environment – to go where everyone else does.
This list can maybe be added to. But the importance of this approach is that it can remove the “problem” of disability from the individual; instead it focuses on the barriers people face and the ways of dismantling those barriers. The CIL approach does not suggest that a person needs “rehabilitation” in order to exist in an inaccessible world. It says that the world needs adapting in order to accommodate the disabled person. This is central to independent living philosophy.
Most Centres for Independent Living, and the European Network on Independent Living, focus on personal assistance as a key component of independent living. This is because lack of personal assistance is so closely linked to being forced to live in institutional care. ENIL was set up in 1989 at a conference in Strasbourg. This conference resolutions says:
“This conference has focused on Personal Assistant Services as an essential factor of Independent Living, which itself encompasses the whole area of human activities, e.g. housing, transport, access, education, employment, economic security and political influence.
We, disabled people, recognising our unique expertise, derived from our experience, must take the initiative in the planning of policies that directly affect us.
To this end we condemn segregation and institutionalisation, which are direct violations of our human rights, and consider that governments must pass legislation that protects the human rights of disabled people, including equalisation of opportunities.
We firmly uphold our basic human right to full and equal participation in society as enshrined in the UN Universal Declaration of Human Rights (extended to include disabled people in 1985) and consider that a key prerequisite to this civil right is through Independent Living and the provision of support services such as personal assistance services for those who need them.” (8)
This resolution locates independent living firmly within the framework of human rights. This is not about doing good to disabled people, or providing them with welfare. It is about ensuring that disabled people can exercise their human and civil rights, equally with non-disabled people. The Strasbourg resolution expresses independent living philosophy in a form that can be understood by governments. Its stress on human rights also expresses another facet of independent living: all human life is of value. It does not matter what sort of impairment you have. No-one is so impaired that their life does not count. In expressing this aspect of our philosophy in concrete form independent living movement has had to battle the way in which social welfare services divide and classify disabled people. In the UK, for example, people with intellectual impairments are classified as having “mild or moderate or severe” learning difficulties. Assumptions are made about what a person with “severe” difficulties can or can not do, and they are rarely offered the opportunity for independent living.
Over the years, disabled people’s organisations have grown stronger
and have been able to reach across some of the barriers put up by social
Philip Mason says:
“Another challenge is ensuring that enabling choice and control, for example through direct payment schemes, cannot be exclusively for one impairment group or age group in our society. What is good for one must be available to all. We need to develop our organisations and systems to enable all disabled people to have the opportunity of independence.” (9)
This means reaching out across impairment groups, learning about each other’s needs and wishes. In a society where people with different impairments are separated into specialist schools, for the blind, the deaf, the intellectually impaired and so on, and as adults are separated into segregated day centres and residential centres, it can be hard for us to know each other.
We need to “Emphasise the ordinariness of our lives - 'show that we are just ordinary people living ordinary lives. We are not special.'” (10)
Being ‘ordinary people’ means challenging traditional attitudes to disabled people as medical cases and objects of charity and care, pity and protection. People who are seen as in need of ‘care’ or as ‘vulnerable’ are not seen as capable of self determination and full citizenship. Peer support helps disabled people to develop self belief as individuals and to work together as a group to challenge unhelpful attitudes. Peer support is a practical expression of the philosophy of independent living.
So, the philosophy of independent living is both simple and comprehensive. It covers the whole range of practical solutions to disabled peoples inclusion. These solutions only come about if disabled people organise themselves to work for political changes to bring about human and civil rights. These rights need to enshrined in law at both national and European level. The politics and the philosophy of independent living are closely entwined.
The philosophy of independent living rests on a simple dream – disabled people living on a basis of equality with non-disabled people. Achieving that simple ideal requires complicated changes – dismantling the apparatus of welfare, providing strong legal protection for rights, creating new sorts of support.
To boldly go – where everyone else has gone before! (11)