In the first of two main articles, SPECTRUM talks about its guiding philosophies – they dictate not just what we do, how we do it, but MOST IMPORTANTLY WHY WE DO IT
The two central philosophies are:
- Independent Living
- The Social Model of Disability
SPECTRUM was one of the organisations that helped define these philosophies. 30-40 years on, these terms are still widely misunderstood. In this the first of two articles, we’ll explain what we mean by these terms, and why they are so important to Disabled People around the world.
Before we talk about our perspective on Independent Living – it is important to say the subject is open and we would love to hear your views – particularly on how we can develop an understanding of Independent Living for Older People and for people who do not consider themselves to be Disabled People. What is for the state to take responsibility for? and what should we be responsible for ourselves? What about the right to a family life and relationships which is highlighted in the UN Convention on the Rights of ‘Disabled People’ but entirely missing from the 12 Basic Rights to Independent Living? WE WANT TO STIMULATE DISCUSSION ON THESE IMPORTANT ISSUES if we are to keep Independent Living alive in the 21st Century.
So: Tell us what you think!
What is Independent Living, and why is a proper understanding important to Disabled People?
Many people believe that independence is about doing everything for yourself, and that, because Disabled People often need assistance in their everyday life, they cannot be independent.
Disabled People challenge this assumption. We say that independence is not about doing everything for yourself. No-one lives in isolation from the rest of humanity, we all depend on each other – that is why we all live together as a society. But, to take part in society on an equal basis we all need Choice and Control over how we live, who we live with, and what we do with our lives
Yet Choice and Control – which are so important to being a fully included member of society – are often denied to many Disabled People. This can never be right. Disabled People refuse to accept that non-disabled People have the right to deny them Choice and Control over their own lives.
It is this fundamental understanding that gave birth to the Independent Living Movement.
What is Independent Living?
Independent Living simply means Disabled People having the same choice, control and freedom as anyone else – at home, at work, and as members of the community. While this does not mean ‘doing everything for themselves’, it does mean that any practical assistance Disabled People need should be based on their own choices and aspirations.
Lots of people have come up with different definitions of Independent Living. They all focus on a few key ideas: choice, control, freedom, equality and inclusion.
- Philip Mason, for example, highlights the aim of equalising the opportunities available to Disabled People:
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.”
- 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.”
- Adolf Ratzka, of the Independent Living Institute defines it as having the same choices as everyone else:
“Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, work in jobs that are in line with our education and abilities, start families of our own. Just as everybody else, we need to be in charge of our lives, think and speak for ourselves.”
At SPECTRUM we simply say:
How do we achieve Independent Living?
Having the finance, and support to enable Disabled People to employ their own personal assistants to assist them with their everyday lives is one very good way of facilitating independence. By employing our own staff, Disabled People can control how the assistance they need is provided, allowing them to lead the lifestyle of their choice.
This is not a choice that is always available however. Disabled people in the UK currently have only very limited rights to support in terms of concrete outcomes to support Independent Living. Such minimum rights as do exist do not guarantee very much more than a right to basic maintenance or survival.
Existing rights are also very limited in scope. Even the right to an assessment of needs is not underpinned by any guarantees about either the level or type of assessment or – most importantly – the minimum levels of support people can expect to receive.
SPECTRUM believes all Disabled People have the right to live independently. Disabled People have identified 12 Basic Rights, which are essential to make Independent Living a reality:
1. Full ACCESS to our environment
2. A fully accessible TRANSPORT system
3. Appropriate TECHNICAL AIDS/EQUIPMENT
4. Accessible / adapted HOUSING
5. PERSONAL ASSISTANCE to enable an independent lifestyle
6. Inclusive EDUCATION and TRAINING
7. An adequate INCOME
8. Equal opportunities for EMPLOYMENT
9. Appropriate and accessible INFORMATION
10. ADVOCACY (towards self advocacy)
11. Empowering COUNSELLING services
12. Appropriate and accessible HEALTH CARE provision
So, it is not just a question of ensuring equality of access to social care services, but of looking at the role of social care and other resources in enabling Disabled People’s full participation in society.
Although many assume this already exists, Disabled People are aware it does not. Disabled people are denied independence on a daily basis, through limited choice and opportunity to participate. Whatever indicator you look at, whether it is educational qualifications, employment statistics, access to suitable housing or health outcomes, Disabled People routinely fare very badly.
While there are still many barriers to overcome, the aim for Independent Living remains a very simple one – Disabled People living on the basis of equality with non-disabled people. Or, as the late Martin Naughton of Dublin CIL put it:
To boldly go – where everyone else has gone before!