Interview August 2008
John is 58 and lives in Petersfield, UK. He is a freelance disability equality trainer.
He is not only an ENIL Advisory board member but also at the European Disability Forum; a former chair of the British Council of Disabled People and joint founder of Hampshire Centre for Independent Living.
How long have you been involved with the Independent Living Movement and with ENIL in particular?
I have been involved with the Independent Living Movement since its original beginnings. I was one of the pioneer activists in the UK in the late 1970s and early l980s. I was fortunate to be able to raise money and go on a research trip to the USA in 1981, where I visited Berkley the birth place of Independent Living, in the USA where I met Ed Roberts and Judy Heuman, the original founders. I also visited other CILs and met many Independent Living activists in St Louis, Boston, Alberqueque and Sante Fe. This was the start of the informal International network of Independent Living. It was a very inspirational experience for me and convinced me of the need to set up CILs and PA schemes in the UK.
In the UK I was involved in the planning and setting up of the first CIL in Hampshire in 1984, together with a number of other colleagues. I was the first person to set up my own Independent Living scheme with money funded from Hampshire to pay for my Personal Assistants. This enabled me to move out of a residential institution into my own home. There was a group of us in the residential home who worked together on this, and we called the scheme ‘Project 81’.
During the time we were setting up the Hampshire CIL, we began to develop contacts with other Independent Living activists in Europe. This was strengthened when many of us met up at the first European Conference on Independent Living in Munich in 1982. After this, many of us from many different European Countries informally stayed in touch with each other. The culmination of all this finally ended up when many of us met up at the European Parliament in Strasbourg in 1989, for some intense workshops and sessions, debating the importance of Independent Living and Personal Assistants. This was when ENIL was founded. There were over 80 disabled people who were personal assistance users from about 15 different Countries present at this event. This was sponsored by the German Green Party who were probably one of the first political parties to embrace Independent Living.
Are you also a member of a national organisation in your country?
Yes, I am a member of NCIL (National Centre for Independent Living) based in London. This is the umbrella organisation in the UK of CILs and other organisations committed to Independent Living and Human Rights. I am also a member of UKDPC (United Kingdom of Disabled People’s Council), which has a wider affiliation of disabled peoples organisations. I am also a member of my local organisation the Hampshire CIL.
How do you see the development of the Independent Living Movement in the last 10 years in your country and in Europe?
I think the Independent Living Movement over the last 10 years has developed quite well. More CILs have developed, more disabled people are using Direct Payments, and we have a Direct Payments Act of Parliament. One of the key developments during this time has been that Independent Living has become more cross disability, representing many other impairment groups, other than physically disabled people. It has become much more inclusive, including people with learning disabilities, mental health users, sensory impairments and older and younger disabled people. We are also now campaigning for an Independent Living Bill.
However, we have been seeing some difficulties over the last few years, with some CILs struggling due to the lack of adequate funding. The economic situation has become much tighter, and there is more competition for resources. These next years will be a big struggle for many of our organisations. The UK is also going through a radical reform of Social Care. This is not all bad news as the Government Policy now has become more influenced by the Independent Living philosophy, and many of our concepts and principles are embedded in the current major Government documents. Control and choice, independence and the involvement of users in planning and delivering of services are all now accepted policies.
I think Independent Living has also developed in Europe over the last 10 years. There are now many more Countries setting up CILs, Independent Living Programmes and Personal Assistance schemes. In the last 10 years, we have seen this emerging in Italy, Spain, Slovenian, Bulgaria, Latvia and Poland, joining the Northern European Countries like Sweden, Finland, Norway, Denmark, Germany, Austria, Ireland, Holland, Belgium and the UK. I think this has also been reflected in the work of ENIL. One of the objectives of ENIL recently, has been to expand Independent Living to Central and Eastern Europe.
How do you manage your personal assistance?
I manage my own personal assistance myself. I have been running my own PA scheme now for 25 years. I am funded by my Local Authority and the Independent Living Fund. I do everything myself. It is like running a small business, and I have a secretary who assists me in all the administrative work of payments of Pas, national insurance and tax deductions, employer’s liability insurance. I far prefer this approach as opposed to using a Local Authority or Care Agency to provide my assistance. It gives me much more control, choice and flexibility for me to do what I want to, and in the way I want to.
Have you experienced different approaches on personal assistance in other countries?
Yes, there are a number of different approaches to Personal Assistance in other Countries. I think this is because of the different political and social systems. There is the Scandinavian approach of cooperatives, which works very well for these Countries, and provides a good community self help approach. Other Countries have the direct payments or personal budgets system, where the individual receives the money for the assistance directly from their Local Authority. In some of the Southern European Countries there are different innovative approaches due to the limited funds available, which encourage people to employ immigrant workers. Other Countries might use volunteers or people doing civil service. It is really amazing though that even in Countries where there is no funding available for personal assistance, disabled people will find ways of doing it. The other point I think is very important to make is the incredibly supportive role which CILs play throughout all Countries in assisting disabled people to live independently, by providing appropriate information, advice and advocacy.
What are your wishes for the future regarding independent living and personal assistance?
I have high hopes for the future of Independent Living and Personal Assistance. The reason for this is that I have a strong belief that the principles of Independent Living are so fundamental and powerful that they are an integral part of the future of disabled people. Independent Living has to prosper because it is based on the Human Rights of disabled people to live like everybody else. If the Government of the UK is using these principles as key concepts in its policies now, then I cannot see why all Governments throughout Europe and the world can also do so. The other encouraging feature is the introduction of the new UN Convention for the Protection and Promotion of the Rights of Disabled People as Independent Living is at the heart of this Convention, in particular Article 19, but there are also other Articles that are relevant for the development of Independent Living, e.g. the Article on Freedom of Movement.