Simon Duffy

Thoughts, Bemusements & Arguments

Tag: independence

The Marriage on the Mountain – Independent Living and Person-Centred Support

This is my fourth and final blog – written in honour of the Social Care Ideas Factory’s (SCIF) event – We Chose to Climb. This event has been one of the most interesting and positive events that I have ever had the honour of being involved in: great people, great talks and great conversations.

The event was, I think, an effort to bring together many threads of thought and action – and to bring together many different groups. I cannot do justice to the full wonderful human complexity of it all in this short blog; but I did get a feeling that, at last, we might be on the cusp of achieving two important marriages – marriages that have at times seemed so unlikely and yet marriages that would be so natural.

The first potential marriage is between the ideal of independent living and the ideal of person-centred support. These are not quite the same things, and they certainly have rather different histories; but there is, at their heart, such a commonality of purpose, that a marriage could be possible.

Independent living is a philosophy of being and action that has been developed by people with disabilities (for audiences outside the UK) or disabled people (for the UK audience).

[The hazards of forming this previous sentence give some indication of how difficult it is to write about any of these matters in a way that won’t upset someone, but I think it’s important that we remember that these ideas do exist in a global context – particularly as people with disabilities have worked very hard at ensuring that independent living is linked closely to the UN Convention on the Rights of Persons with Disabilities (UNCRPD).]

People with disabilities have been advocating for independent living for about 50 years – this is not an insignificant period of time.

There are some subtle differences of definition that can occur. Independent living is certainly very closely aligned to the idea of rights. As such it is an assertion that we have socio-economic rights (an idea that the current UK Government seems to have abandoned, but which is fundamental to the UN Charter on Human Rights). But it is also an assertion that these rights have to be sensitive to the many forms of discrimination or disadvantage that occur for people with disabilities. Perhaps most importantly, it is a challenge to the welfare system, that was developed in the era of Human Rights, after World War II, that these rights must be designed in ways which respect individual choices about lifestyle, relationships and identity.

Practically, independent living was the philosophy used, by many people with disabilities, to insist that they should not have to suffer institutional living, just because the welfare state had now absorbed institutional ‘care’ services.

The philosophy of independent living is also closely, sometimes perhaps too closely, identified with all sorts of positive service developments: personal assistance, accessible buildings and transport, direct payments or individual funding. These developments have all been very good, but one danger is that we confuse the philosophy of independent living with a particular mode of living – say, living in your own accessible flat, using direct payments and employing personal assistants. Independent living, in its true sense, means living as you wish, in the way that makes most sense to you, to your relationships, to your community and to your values – it is certainly not a prescribed lifestyle.

The concept of person-centred support is not the same as independent living; its roots are more diverse, and it is rarely treated as an explicit political goal in the same way as independent living has been. The term has taken root in counselling, in support for people with intellectual disabilities and in the world of dementia. As this suggests, it is an approach that seems helpful for people who might be disadvantaged because they have difficulty expressing themselves, making choices or find the right lifestyle for themselves. In practice, whether it is through planning, therapy, conversation or action, it is an effort to respect the identity of a person who might otherwise be ignored and erased from proper consideration.

Now I must be careful here – when I say that these two concepts might marry I do NOT mean that these concepts are the same or that they might be merged into one concept. Anyone who thinks that has not been married or has not paid attention to what a marriage is. A marriage is (or should) be a respectful union of two equals. Marriage involves, negotiation, love, mutual support and joint effort – for a common good. What I mean by marriage is that these two ideas might be used to complement one another and to develop a better understanding of common problems and shared solutions.

However, it is quite natural for many people with disabilities to be suspicious of person-centred support; for it may appear to be yet another ‘trick’ of the professional establishment to prod, poke and interfere with their lives. Accepting person-centred support might appear to be a false and unnecessary admission of weakness: Don’t give me person-centredness, give me control!

Yet the greatest danger of completely rejecting person-centred support is that it can narrow the world of disability considerably. Given natural human diversity and all the inevitable frailty of the human condition – all of us need assistance and those most like to face the barriers of disability are those who need assistance with communication or decision-making, those who are locked in anger, fear or sadness and those who suffering from illness or chronic health conditions. If our idea of disability is dominated only by the image of the wheelchair then the world of disability has been radically reduced.

At the heart of person-centred support is the bold assertion that everyone has value, everyone’s life is meaningful, everyone has something to contribute. This assertion is part philosophy – an ethical commitment to the equal value of all human beings – and part methodology – start by assuming value and you will find it.

So, my claim is, independent living needs person-centred support  because, without it, there is a grave danger that too many people with disabilities will be exiled to a place where they are deemed too disabled to be disabled. This is not right and it not helpful.

I also think that we must be careful not to rely too heavily upon our rights. Rights exist because duties exist – and human history tells us that, far too often, societies can quickly become blind to their duties and responsibilities. An awareness of right and duties does not flourish unless we are also aware of ourselves as interdependent beings, with innate value, and with multiple capacities to contribute – including the contribution to community that we make when we need assistance.

But person-centred support also needs independent living. There is a grave danger that person-centred support – which does just lack the same authentic roots as independent living – will morph into another professionalised approach, and will lose its way. We’ve certainly seen signs of this in England, where the institutionalisation of “person centred plans” as the new “care plans” promised so much, but has delivered so little. Person-centred support can open up new possibilities and offers the means to nurture mutual respect; but it is no replacement for robust rights, collective political action and practical peer support.

So, we can use both ideas, they are not the same, but they each offer something valuable and distinct.

There is a second marriage that would be useful, and that is the marriage of people and professionals. Again I do not mean to abandon the obvious differences that might exist between many millions of people on either side of that line (and the very many who stand with one foot on either side of that line). Self-identification as a person with a disability or in whatever group is useful, remains an essential first step toward claiming our rights. However, there are several reasons why a marriage between such diverse groups, might be advantageous.

First, there is the obvious political issue; for there is currently no assurance that there will be any professional services, of funding for personal assistance or for personal budgets. In England ‘adult social care’ has been cut by 30% in just four years – there is little point debating the niceties of the organisation of ‘adult social care’ or ‘personalisation’ when the whole edifice is crumbling around us.

Second, there is the call from many – both people and professionals – to drop many of the professional barriers, bureaucratic systems and undue regulations that make it more difficult for everyone to lead the best lives they can. These intrusive and ineffective controls have grown progressively over the years as trust between the front-line, management and politicians has declined.

The welfare state has become bureaucratic welfare. This situation will only be reversed when people with disabilities, families and professionals – together – start to insist upon and demonstrate the value of low-bureaucracy solutions.

Third, there is the fact that the capacity to collaborate collectively, across the professional boundary, will unleash some of the greatest innovations, support and community change. I see this in all of the best social innovations today – they are all the combination of a little money, a few employees, and a great release of creative action – rooted in community action.

The challenges of these marriages – of ideas and of people – are tremendous. They mean overcoming decades of mutual suspicion and misunderstanding. It means being able to think about problems from multiple perspectives. It means including others who might seem ‘too different’ to be included. But the risk of not achieving such a marriage is even greater.

Today, at the end of the conference, SCIF launched their next collaborative project – the Sherpas Union. This project will attempt to build an international movement of all those endeavouring to improve lives, for themselves, and for others. Perhaps it could be one means to promote the courtship between these different groups and these different ideas. It’s too early to predict, but I for one will try to do all I can to help out, and I have already applied to join.

Making Citizenship Real

Although we can call someone a citizen and say we wish to treat them as an equal it turns out that there are some very real things we need to do in order to make such a claim real. Stigma and pride take hold so easily, and so societies must learn how to clothe each other in citizenship.

My own account of the keys to citizenship is rooted in the practical work of supporting people with intellectual disabilities to build good lives for themselves. You can read more about these ideas and their practical consequences here:

Keys to Citizenship

There is a philosophical logic to my presentation of these elements of citizenship, but each element is distinct and can develop somewhat independently of the other elements.

In my account of citizenship we can identify seven keys to citizenship:

  1. Purpose – we live a life of meaning
  2. Freedom – we can pursue our purpose
  3. Money – we have the means to pursue our goals
  4. Home – we can belong in community, but also protect our privacy
  5. Help – we can offer others opportunity
  6. Life – we can contribute in our own way
  7. Love – we can build relationships and new life

A distinct sense of hope and purpose in life turns out to be critical to self-respect and to the respect that others give you. If we meet someone who is adrift, in a life without meaning or purpose, we struggle to respect them. If we meet someone who has a sense of purpose then it becomes easier to engage with them as a distinct equal. Notice however that uniformity of purpose is not helpful and does not stimulate respect. You have no reason to respect the purposes of people who share exactly the same goals as others or yourself. In a strange way such uniformity breeds contempt.

Beyond a sense of purpose people need to be free to realise their purposes. If someone is utterly under the control of someone else then their dreams and plans lack integrity. It is only when we see that someone is free to follow their purpose that we can respect them as a free individual. In the same way, our self-respect is diminished if we are imprisoned – even when that prison may be provided by the love and care of others.

In the modern world our active civic engagement also requires sufficient money to make our purposes meaningful. Although it is possible to imagine a world where there was no money it is uncomfortable to realise that this would mean that people would only do what you need them to do from either love or fear. Money makes possible free exchange, specialisation and a plurality of useful opportunities for contribution and employment. In passing it is also worth noticing that, from the perspective of citizenship, the right to money ceases when someone has sufficient money to be able to enter into and engage in citizenship – freed from gnawing poverty. However the super-rich are also at risk of leaving the realm of citizenship.

The fourth key to citizenship is a home – a physical location where one belongs, where one can retreat to in privacy and which one can leave to enter the public realm. Over exposure to the public realm or severe communality is a threat to citizenship. The private nurtures the capacity for self-development and offers a haven to families.

The fifth key to citizenship is the need for assistance – help. This is one of the most important, but most frequently missed, aspects of citizenship. A citizen who has no need of anyone is not a citizen. They offer others no opportunity for contribution – they are a ghost amidst the living. The balanced position is to avoid undue dependence, where the need for help leaves one in servile reliance on others. We can need the help of others, and yet still maintain our independence – our freedom.

Citizens recieve, and citizens also give, and while there is no virtue in achieving some perfect balance – that would be both impossible and meaningless – contribution is vital to citizenship and the self-respect of the individual. And we contribute by living – by joining in, working, caring and taking care of each other. Life can only develop though our active contribution to community.

Finally the fruit of citizneship, and its ultimate source is love. Love is of course a greater force than citizenship – nevertheless it does relfect successful citizenship. This is all forms of love: agape, storge, philia and eros.

This account of citizenship is offered as a bridge. Political theorists rarely think about disabled people or others who can experience severe disadvantage because of the prejudices, barriers and structures imposed by the majority. Disabled people have been developing interesting accounts of social value and social justice – but often cut-off form mainstream thought. I have developed this model of citizenship to demonstrate how relevant are these experiences and theories to mainstream political thought.

If our society is not aiming to be a community of citizens what is its goal? If theorists are not advocating citizenship for all, what are they advocating?

It Is Not a Good Thing To Be a ‘Do-It-All.’

We often want to do everything ourselves, but that is a mark of false pride. Even what we owe to others belongs to ourselves, and that is part of our own lives. And when we calculate just how much we owe to others, it is not only un-Christian, but useless. What we are in ourselves, and what we owe to others makes us a complete whole.

Dietrich Bonhoeffer

The idea of independence is good but is often confused.

We value learning skills and we can often advance our independence by learning something that we didn’t know before. But this is an inevitably finite goal. I cannot learn everything – just because I am finite and human. And if I did know everything what would that mean?

It is not a good thing to be a ‘know-it-all.’

It is essential to our humanity that we need other people. To learn from them. To get their assistance. Of course this is essential to ourselves – to our well-being. Without love and assistance from others our lives would be empty. But it is also important because our needs create opportunities for others to contribute – needs give meaning to all our lives.

It is not a good thing to be a ‘do-it-all.’

What we value is having control over our lives – freedom. Even this is not an unconstrained freedom. Freedom is an expression of self within the context of our community – it is a form of creativity which requires a medium for expression – things which we can control, but also things which are outside our control, but which provide the fabric of self-expression.

As Bonhoeffer observes the goal of independence, understood in a shallow way – me doing everything for myself – is not only false it is a sin. As Bonhoeffer also sees the sin is a failure to acknowledge that what we owe others is part of ourselves – and to deny the reality of this debt is a kind of ingratitude.

Understood in a deep way – me being myself, expressing who I am, with support from others is true and is how we become a “complete whole.” It is also a way of valuing each other, it is at the heart of mutual respect and community life.

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