Keynote at the Expert Seminar
organized by the Hampshire Center for Independent Living
in Southampton, May 30 -31 1998
by Philip Mason
I am privileged and overawed to be the first speaker in this conference. A conference which is looking at the future in respect of those well known phrases 'Independent Living' and 'Direct Payments'. It is a privilege and also a responsibility because I need to strike the right note. I need to encourage but also to challenge.
So where do we start? Do we talk about the past; look at the present, and then think about the future?
We ought to do a little bit of all three and it is my job to start the ball rolling.
First the past and let us congratulate ourselves on having moved things forward. We are here to talk about things that have already started to happen in many parts of Europe. So in the first instance let us look around and pat ourselves on the back for having put the issue of independent living on to the map.
The concept of independent living, that is, disabled people being enabled to lead active lives at work, rest and play is now beginning to be understood all over Europe.
We have done this. This is a major achievement.
Of course, it is just not us alone. We have been aided, supported and encouraged by our allies. First we won the intellectual debate. Then the practical debate. And last but not least, the legislative arguments.
So at the beginning of my address I want us to be encouraged by where we have come from and what we have arrived at - of course not all of us, but a significant number.
We are no longer trying to persuade people of the value of our convictions. This in itself is a major achievement of which we can be justifiably proud. Not in the self congratulatory sense, but in the sense of something well done. Something worthwhile has been achieved. We have changed policies and practises, each in our own countries. And we have begun to change public attitudes.
Of course we have not arrived. Of course there are still obstacles to be faced but at least the journey has begun.
In my case here in Hampshire, our background was in nursing homes. If you were not looked after by your friends and relatives in the family home the only alternative was the nursing home. That was the prospect for disabled people sixteen years ago.
In 1979 a group of disabled people in a local nursing home proposed to the local government that instead of paying for them to be looked after in a nursing home they should give these people the money and they would look after themselves in their own homes in the community. That happened. That is our history. And that was a significant development.
We were not alone. Things like this were happening all over Europe. In different ways, in different circumstances, disabled people were challenging the accepted traditions. Disabled people were seeing themselves as human beings and wanting to live as their non-disabled friends and relatives did. In other words we wanted to be able to access ordinary lives at work, rest and play.
In Hampshire we imagined that once we had shown that it could be done, this would open the door and many other disabled people would follow. That did not happen.
Each in your own countries know the obstacles that seemed to spring up - it was almost as if each disabled person had to re-invent the wheel in order to make something happen. So it was for us; nonetheless we were eager to share our experiences. We established a local organisation to do this. This too was happening elsewhere throughout Europe.
Our local problems were to do with concerns over the legality of the payment process and the unavailability of suitable housing. Similarly elsewhere, disabled people were caught up in local and national legal and bureaucratic wrangles.
Mid way through the 1980s came a very significant development. A conference organised by disabled people met at the European Parliament in Strasbourg. The outcome of this was the Strasbourg Resolutions which asserted our desire to be given the means to enable equal opportunity at work, rest and play through funds to purchase personal assistance.
The most important outcome of this meeting was the establishment of an international peer support organisation the European Network On Independent Living. We found allies each promoting independent living in their own country. We supported each other, sharing information and advice.
In Britain the most important matter was legislative - to legalise the payment of monies (instead of services) from local government to disabled people. Towards the end of the 80s we began the campaign that ended with legislation in the mid 90s.
This was a major achievement. We had taken the idea of 'personal assistance' on to a national platform. It was debated in the national assembly. The idea of disabled people being enabled to exercise choice and control over who took them to the toilet had been put on the national agenda.
Which brings us to where we are today.
In Hampshire we already had a payment scheme. In April 1996 there were some 500 people buying and organising their own assistance. The Hampshire scheme was simple and flexible.
The arrival of national legislation meant changes as our old scheme had to fit into the new laws and regulations. We felt this was a price worth paying for two reasons:
We felt that the re-structuring of our old scheme was a price worth paying. However, we were not prepared for what followed - the bureaucracy and the involvement of lawyers and accountants. So here we are today wrestling with the sudden onslaught of legal and technical details which have swamped what was once a simple and straightforward scheme.
We dreamed a dream: the means to be enabled access to work, rest and play through funding to purchase and organise personal assistance. Along comes legislation which fits things into Government criteria and things turn out different to the dream.
Let me make something clear.
Direct Payments are not independent living because Direct Payments are a local government provision which meets central government legislative needs and nowhere in our country does legislation contemplate the enabling of equal opportunity through the provision of personal assistance.
Our dream was that disabled people would be enabled to become active citizens at work, rest and play thereby fulfilling their roles in terms of taking the opportunities society offers and meeting the responsibilities society requires.
We believed that direct payments would enable this but that is not so. What has happened is that Direct Payments is seen as just another means of providing social welfare. At the basic level it is seen in the same category as attendance at the Day Centre, an auxiliary nurse getting you up and putting you to bed or two weeks in a respite home.
It is not independent living. Direct payments is defined by local government to fit national government legislation. It is prescribed on the basis of eligibility criteria and the extent to which it can give support is determined by the tasks identified by legislation.
The dream was to do with being enabled to be an active citizen at work, rest and play. The fact of the matter is this is not available because nobody else is enabled to achieve these ends through social welfare provision. Instead eligibility criteria is seen in terms of the individual's vulnerability. The tasks that can be financed are to do with the simple facts of life, getting up, going to bed, eating etc. Issues to do with social integration are little addressed. As for work, rest and play, the means to these ends are not available.
You see the dream came up against reality and the dream has gone out of the window.
But it is not only legislation that has resulted in many more fingers in the pie. The identifying terminology has been stolen by others.
Suddenly the term 'independent living' became a catch phrase for social welfare professionals, for the orthodox charities and for anybody else...
Suddenly 'independent living' became sexy and everybody climbed on the bandwagon ... each with their own definitions, each with their own special interests.
To the extent that the term Independent Living is now avoided by many of those who originally identified themselves with the phrase!
So now we see independent living bungalows; independent living aids and appliance centres; independent living homes; independent living advisers; independent living research...and on, and so on. It is just another commodity. We have lost control of the very creature we created. Each interest group has defined the term to its own advantage. And the original concept - the aspirations of disabled people - have been lost in the scramble.
But it not just that direct payments are not independent living - and it is not just that the term 'independent living' has been stolen - no, it is that despite all the developments the underlying problems are still there.
What we can and cannot do is still decided by others.
The fact of the matter is disabled people remain dependent in terms of what social welfare will enable them to do. The dream of being able to participate in all aspects of life at work, rest and play has not been achieved despite the many claims to the opposite. And this is not because there is no local will to achieve it but because much of our national legislation is built on the basis that by and large we are to be 'cared for' by friends and relatives.
We have made major achievements but these have not dealt with the underlying national understanding of the role of disabled people in society. It is still in terms of the old definitions. We are to be cared for! There has not been the radical development we originally envisaged - disabled people being enabled to participate in all facets of society. This outcomes, though high on political rhetoric, do not materialise in practise.
In our country government have proposed the policy of 'welfare to work' but as disabled people already know, much of the financial infrastructure is such that the possibility of earning an income is ruled out by the very fact that you would lose more than you would gain.
That is to say that the very means that give us independence and the ability to go out to work would be removed through financial penalties based on the income earned...to the extent that it wouldn't be worth going out to work in the first place.
These financial disincentives have not been removed. This is a supposedly caring society who talks about enabling individuals to fulfil their potential and so on. The reality is the very opposite. If you are a disabled person the financial incentives are still against you.
Having talked about where we have come from and where we are at today, we need to look to the future.
I have already drawn attention to paid employment and the problem of financial disincentives. But this is only a symptom. We need to get to the heart of the matter and consider the question, why should society support its disadvantaged?
We all come from nations where people are voting to pay less taxes. Lower taxes and better public services are contradictory concepts. You cannot have better public education, better public social welfare, better public health with ever decreasing taxes. It is inevitable that the one affects the other. Our governments have all promised the electorate lower taxes and the consequence is lower funds for public services.
If we are to promote the case for better services for ourselves then we need to explain our position at the national level. We need to tell our fellow citizens why it is that they should contribute towards enabling our independence.
For people with a national background in social democracy, (those that accept mutual interdependence), this statement may come as a surprise. But even in your countries I suggest this mutual interdependence is being challenged.
I would argue that perhaps the most important thing we need to do now and in the future is to explain to the public what we mean by independent living and why it should be enabled, funded, from the public purse. I think this the major challenge we face.
Remember the dream. We need to challenge the persistent image of our being burdens, drains on the public purse and in its place explain our desire to be fellow citizens being enabled to accept responsibility and make our own contribution.
Next, to turn to a second challenge: we need to say 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. And this too is a challenge: how do we make sure that the choice and control payment schemes bring is made available to all?
Traditionally the payment option was seen as being something for physically impaired peoples only. That is how many schemes started - although they never set out to be exclusive.
We all realised long ago that direct payments were an enabling tool that would work in many different circumstances. It is to our deep regret that only now are we beginning to talk about ways in which this option can be developed.
Only now are we talking about structures that can make direct payments more flexible, more adaptable.
Only now are we recognising that not everybody can hire and fire but most would like the choice and control this brings.
Our task is to make the payment option more available; our task is to enable more choice and control for people who want the greater flexibility this option gives.
How do we achieve this? How do we structure things in such a way as to make sure these developments take place?
Today and tomorrow and the following weekend these themes will be taken up and expanded. At the heart of it is our dream for our significance to be recognised and enabled.
In closing may I encourage you all: Don't forget the dream whilst at the same time dealing with day to day realities. Keep your eyes on the horizon whilst taking one step at a time in the real world. Don't be disappointed if some of these steps may be backwards or sideways, ultimately we will go forward to that the horizon we all have been working for.
And remember, we do this not for ourselves but for those who come after us, those who inherit what we have done. We owe it to them to leave things better than we found them.