Building an Independent Living organisation fit for the twenty first century. Underpinning organisational development with empowering principals

Dr. Jane Campbell, Chair of the Social Care Institute for Excellence in England, contemplates the future of Independent Living organisations, including work together with non-disabled persons (which she calls, "the mutuality route.") She concludes, "our independent living organisations to be fit for the 21st century we must have principles of: full inclusion, valuing diversity, equality of opportunity, human rights, civil rights, and citizenship. Internet publication URL:

23 May 2003
Jane Campbell

When contemplating the future of Independent Living organisations, we should reflect upon our history, to revisit the principles that have advanced our independence and see if they still hold up today or if it's time to modify them. So let us look for a moment at our rich history of building disabled people's independence.

In the early 70s disabled people began to reject Northern Europe's tradition of state welfare. Special housing, special schools, special transport, did not meet the aspirations of disabled people wanting to be full integrated members of the community. Disabled people wanted to choose where to live, and use the same facilities as everyone else. To do this we needed to redefine the notion of 'disability' and 'care'.

Disabled people and our organisations spent many years developing a philosophy about ourselves, how we relate to the rest of society and probably more important, how society relates to us. It is known as the Social Model of Disability, the disability movement’s tool for social inclusion. The name is not important, in fact at times it has caused confusion. The idea however is totally liberating for disabled people and set the foundation principles of our independent living movement and personal assistance organisations.

You will all be familiar with the term Social Model. But sometimes we need to be reminded of its principles as we develop our capacity to modernise our organisations.

Let me remind you of the fundamental principles of this philosophy, that although developed in the early 70’s have guided disabled people in the struggle for rights.

Disability is a situation, caused by social conditions, which requires for its elimination the following:

  • That no one aspect such as income, mobility or institution is treated in isolation.
  • That disabled people should, with the advice and help of others, assume control over their own lives.
  • That professionals, experts and others who seek to help must be committed to promoting such control by disabled people.

These principles locate the problem of disability with society - something we can change/improve. How liberated I felt when I realised I was not the problem and no longer had to apologise for my existence! How liberated could we all feel if we constantly retained these basic social model principles when running and developing our organisations and movement.

As we move further into the 21st century, the term ‘care’ has a myriad of definitions. For some people it implies notions of love, support and safety; but for others it means imprisonment, lack of rights and abuse. Likewise, the term ‘independent living’ to service providers, can mean provision of a bath aid, or a day centre place where you learn how to cook, wash, dress or alternatively, it is facilitating someone to feel in control of their life. In order to move forward from this confusion, the new social care management partnerships of the future could do well to observe how the disabled people’s movement have redefined and resolved our ‘care needs’ into personal assistant requirements and supportive environments.

Unfortunately, during the 1980s and 90s, the majority of health and social services professionals failed to acknowledge and build on the work of the disabled people’s independent living movement. Instead they crudely applied the term Independent Living and ‘empowerment’ to already well established ‘community care’ type policies and services that placed an undue emphasis on professional assessments, functional inability’s and eligibility criteria. They represent distorted interpretations of the original meaning; i.e. to have control over your life and to exercise your human and civil rights.

In building our independent living organisations in the UK, we disabled people have had to struggle hard against the temptation to mirror old professional ways of working, where too much was decided about the way disabled people should conduct their affairs. To stop ourselves doing this, we must constantly return to the fundamental principles of the social model of disability. Otherwise disabled people end up speaking on behalf of those who have no little or no voice in the movement, in exactly the same way as the non disabled professional did to us when we had no power or influence. We can represent each other democratically, only when we fully involve all our brothers and sisters in the solution finding process. I'm talking here about Black/white, gay/straight, physical or sensory impairment, learning disability, old and young.

As we work with those who support our independent living ideals, but are not disabled people who use services themselves, we must never assume they will naturally share everything we believe in. As it has been a challenge for disabled people to truly support and include all impairments, how difficult it must be for none disabled people to work on our behalf. The oppression faced by disabled people everyday of our lives is complex and often hard to grasp if you do not experience it, so we must help non disabled people from a mutuality perspective. Let me explain.

When I left the National Centre for Independent Living to work as Chair of the Social Care Institute for Excellence, my hardest job wasn't giving speeches to hundreds of social workers or chairing a board that had the responsibility of spending 4 million pounds wisely! No, my hardest task was changing the organisational culture so it felt and became, more inclusive. You would think that a group of people who had worked closely with disabled people and other service users for many years, would naturally know how to develop an organisation that was fully inclusive. Not so.

An incident whilst I was working at one of our National SCIE conferences, illustrates well what challenges lay ahead for disabled people, when we think about changing organisational cultures. Before I tell this story, it might be worth pointing out that the theme of the conference was 'Listening', listening to our users in order to give the best service. You can judge for yourself whether my organisation SCIE, was listening to know if my needs were being met.

The story starts at the end of a pretty long and intensive conference day in Birmingham. We had all retired to our hotel rooms with a plan to meet at 8pm to enjoy a meal together. I arrived a little after 8 to find all the staff huddled together waiting for their meal. As I got closer to the group I found that they were all sitting at a table on the mezzanine level - accessible by only the three steps! I sat there assuming they would realise their mistake and find another table on the ground level, one of the party said 'oops sorry, I switch off at 5 O'clock!' (I wanted to scream at them - 'I'm sorry but my disability doesn't', but knew that this was not a helpful way forward). Another weakly said they had sat there because that's where the waiter had put them. Not one person moved. I was stunned into silence and silence broke into rage. I remember feeling these emotions when fighting to access public transport or when being turned away from a pub because I may 'get in the way'! That was many years ago - how could it be so amongst my fellow workers?

The answer was obvious, but I was too close to the issues to realise immediately. If you do not experience the oppressive results of an inaccessible environment every day, it is impossible to constantly remain vigilant. So my group of physically able colleagues, screwed up. It was the end of a long day and they just did what came naturally - to obey without question the waiter's direction, as this is social convention. When I arrived and drew their attention to the problem, embarrassment and excuses followed and then passive inertia. They had forgotten the fundamental social model principle of full inclusion; "that they, the so called experts, who seek to help our independence, must be committed to promoting our inclusion". This is not limited to a time of day; it must be part of the organisational culture. That night I did not make a fuss because it would not have ended with the desired outcome. I was far more strategic and, I think, fair. I came back and set up, in collaboration with the Chief executive and a senior colleague who was expert and experienced in the social model, to prioritise an inclusion and participation initiative. This action would assist and encourage the staff to fully understand and own the social model and think about working in an inclusive way. We have identified money to develop projects to build full inclusion into all of SCIE's activities and an education and training programme for staff, which will be developed by a dedicated post that also has the job of organisational culture change. It is hoped that we can instil non-discriminatory principles and practices in all SCIE's work. Only as an entire team can we create an inclusive organisation fit for the 21st century.

Discussion about what creates exclusion is important for all of us. We have to understand what block this change from the user and the provider perspective and then plot a shared solution. I call this the mutuality route. By disabled and non-disabled people sharing their knowledge of different types of oppression we can broaden our thinking around independent living and personal assistance. What it takes to be a good employer and employee and ultimately, a person with decent social values. A combination of our best thinking and a collaborative outcome solution, has far more likelihood of surviving all our prejudices of how "it's might fail"!

To do this work we have to move beyond the very narrow user directed pattern of empowerment, which has indeed benefited some of us. If we want our organisations to fully include all disabled people and take non disabled workers along with us, it's time to listen to those who feel left out now. Like I felt left out that night at dinner.

In the UK the independent living movement has begun to broaden our thinking about how we should include disabled people with different kinds of support needs, at the heart of our organisational development. We have been looking at our capacity to develop new styles of support for older people, for people with learning disabilities or those with mental health problems. We have recently campaigned for Direct Payments to be available for 16 and 17 year olds and parents of disabled children. We feel that our personal assistance campaigns and Independent Living organisations have been too narrow and exclusive to disabled people who are physically impaired, white, middle class and clever who can navigate their way through the system.

If we are to build an inclusive Independent Living organisation we should ensure that we take the principles of independent living, these being choice, control and autonomy, to those disabled people who are not yet evident on our boards, amongst our membership and amongst our staff and listen to their ideas of how these principles can be made a reality for them. Until recently in the UK you could not have a direct payment unless you were able to demonstrate that you were 'willing and able' to manage it. This excluded many disabled people who, at times, are neither willing nor able to manage their Pas. The independent living movement realised that this excluded large numbers of disabled people who could and should exercise choice, control and autonomy in their personal assistance arrangements with a different kind of support.

For instance some people with mental health issues want their PA to tell them what to do in times of crisis, (a concept which on the face of it seemed counter intuitive to all we held true). They feel they can be in control in this crisis situation by producing an advanced directive of how they would want to be treated. When they do not feel capable of making decisions or knowing how to behave, the written directive, which the disabled person has had full control over, forms the basis of the PA's actions and work.

Since I have been involved in the disabled people's independent Living movement I have kept with me the following quote. This quote constantly reminds me of why the 'nothing about us without us' social model principle is so important when working with people who are not in my 'own image'

“We learn, when we respect the dignity of the people, that they cannot be denied the elementary right to participate fully in the solutions to their own problems. Self-respect arises only out of people who play an active role in solving their own crisis and who are not helpless, passive, puppet-like recipients of private or public services. To give people help, while denying them a significant part in the action, contributes nothing to the development of the individual. In the deepest sense, it is not giving but taking - taking their dignity. Denial of the opportunity for participation is the denial of human dignity and democracy. It will not work.

Saul D Alinsky, 1972

Our independent living organisations across Europe have been built on the solid rock of control, choice and autonomy but in my view has done less well on issues of equality and inclusion. Now that we are beginning to face our own prejudices or lack of thinking in this area, our creativity is excelling itself! Solutions to the barriers faced by older people, mental health survivors, people with learning difficulties and children in gaining their independence is producing healthier and more diverse communities, where no one should be left out in the cold. By working in this way we are not only working within the principles of the social model but are underpinning our organisation with a Human Rights ethos, which values all.

In conclusion, for our independent living organisations to be fit for the 21st century we must have principles of

  • Full inclusion
  • Valuing diversity
  • Equality of opportunity
  • Human Rights
  • Civil rights
  • Citizenship
  • Continuous personal and collective development

So an IL organisation that reflects those principles and values would be a democratic organisation with a clear framework to ensure disabled people remain the majority voice. It should be an inclusive organisation; so that disabled people from every background would get an equal voice; It must be a learning organisation; sharing best ways of doing what we do and developing best practise; and a creative organisation; finding new ways of supporting independent living.

Being a learning organisation and being a creative organisation is a challenge. We need to think outside our own networks. One example I came across recently in England was a network called Common Purpose, which is about citizenship; this gives us lots of general lessons we can apply to the particular aspect of our own organisation. Common Purpose's vision is that they can improve the way society works by increasing the number of informed and engaged individuals who are actively involved in the future of the areas in which they live and work. For a democracy to be strong, it needs an active civil society, in which citizens are both informed and connected.

We need to move away from thinking we have to invent it all! In the pioneer days, we had to invent a lot, there were not many good templates for us to pick up. But don't forget even then we were borrowing. We were borrowing from the civil rights movement like the women’s movement and from the anti-apartheid movement. Don’t be afraid to borrow again. To be in control of our lives doesn't mean we can't learn and take from other ways to live! We do not have to control everything we do, to the detriment of developing our skills. Look for creative partnerships, think outside the box! That is the way to build an independent Living organisation fit for the 21st century.