Tribute by Frances Hasler

ENIL, John and me

Some of my cherished memories of John are from our shared trips to ENIL gatherings. I was privileged to be at the inaugural ENIL conference in Strasbourg in 1989.

John called me out of the blue one day and asked if I would like to go to Strasbourg with him, as a volunteer PA. I knew that a delegation from the UK was planning to go there, and I was excited at the prospect of being part of it. But I was cautious – I had never worked as a PA with John, I did not know how the demands of the trip might affect my epilepsy, and my French was very limited. John was unfazed – he was sure things would work out.

So, we set off on the ferry from Portsmouth, with his friend Mike as our driver. We had a leisurely journey through France. John really liked to be spontaneous, so much so that he had not booked any accommodation for the trip; the first night saw us driving slightly anxiously through the outskirts of Rouen, looking for somewhere to stay. The Campanile we found was ok but not the charming country lodging that John had imagined. We did better the second night, in Colmar, where the building was old fashioned and spacious.

 

Finally, we got to Strasbourg where John got straight down to work as part of the organising group, and I went off to track down an accessible hotel!

That conference was my introduction to so many wonderful people – Adolf, Bente, Judy Heumann, Manfred, Theo, Kalle – sadly all no longer with us. It had huge energy and warmth. As a PA I did not get to contribute during the main sessions, but there was plenty of free-flowing chat in the social times afterwards. John was in his element, making links, gently keeping people on track – everyone had a view, and John and Adolf employed all their diplomatic skills to ensure sure a consensus was reached. 

 

At future events I was able to go in my own right, using funds from the EU Helios programme, and John was able to get enough funding to bring a paid PA. We went together to Stockholm, Turin, Dublin and Lisbon, and we organised two events in the UK, one in Southampton and one in London. Each time there were inspiring sessions and great socialising.  I got to meet wonderful women including Jaime, Kapke, and Gordana. Wherever he went, John was at the centre of the discussion, and he seemed to know absolutely everyone. 

One of our most memorable trips was to Tenerife. The conference was held in the most flamboyantly decorated hotel you can imagine. The island government was very welcoming!

Taking part in ENIL events was really valuable. It gave us new ideas, and it helped us in campaigning for Government support for independent living. Being able to cite examples from across Europe was a good way to reassure politicians that we knew what we were doing.

 

Our links with Judy Heumann continued on another very memorable trip with John, to the Global Summit in Washington DC. This time, John had been sponsored to have two PAs travelling with him, which felt very special. (It didn’t happen again, sadly.) Meeting people from round the world who were also working to achieve independent living was really stimulating.  We were feeling very upbeat – the UK had just legalised direct payments and we had set up the National Centre for Independent Living, with me and Jane Campbell as co-directors and John chairing our committee. Heady days!

My friendship with John led to so many fantastic experiences, and to the satisfaction of being able to make a positive difference to the lives of thousands of people, through our shared work on establishing direct payments in the UK. So, I miss him and celebrate him, with a lot of gratitude for his life.

 

Frances Hasler