Tribute by Tina Coldham

Remembering John Evans OBE – Celebrating Independent Living

I fully intended to make a vlog to celebrate my relationship with John and what he had achieved.  I kept putting it off, down the list of to dos.  Then one day as time was ticking on, I asked myself ‘why am I procrastinating doing this?’. I realised that I was putting off doing it because the passing of John is still so sensitive for me, and death is a trigger for me having enduring mental health problems.  So, I bottled out!  Writing for the website, I can get over my thoughts and feelings without you having to see me crying and looking like a cake left out in the rain!

I had to think when I first came across John.  It must have been pre-millennium when I started to get involved in wider disability politics in Hampshire.  I was instantly impressed at the organising and the history that John was pivotal in creating.  Through this I was introduced to direct payments in social care.  I subsequently took up a national research position to help introduce direct payments in mental health. The overall research lead was very user involvement focused so I was one of four people with personal of mental health service use to be county leads across England.  Our training from the off was John leading about his experience of fighting for direct payments in Hampshire, and the subsequent national changes that were made so that other people with physical disabilities could get the support to stay in their own home, rather than having to live in a care home setting.

Our three-year action research project looked at adopting the Independent Living principles into mental health, and the ways in which direct payments had been successfully introduced in social services. We discovered by doing, making that happen in mental health.  The Department of Health (as it was then) was keen to fund this research to ensure there were some success stories, examples, and general increase in take up across the land.  We were very successful with modest but hard-won targets. John and his wise words were key to laying the ground work and keeping us on track.

I have stayed involved with the Hampshire disability movement ever since.  John was a mover and a shaker here. He of course also had an international reach.  He worked hard and was greatly respected by all. He asked me to sit on the Advisory Council for the European Coalition for Community Living (ECCL) with my perspective as a mental health service user.  I had the honour to speak at a conference in Zagreb Croatia on direct payment in mental health and how we made that happen in England.

It was in Croatia that highlighted the fight that John had set put for us.  Whilst there, John went to a bank with his PA to withdraw some money.  Of course, the bank wasn’t accessible as it had steps outside.  So, John duly waited after instructing his PA on what to do on his behalf when going inside to see a bank teller.  A little old lady walked by John and pressed a small coin into his upturned open hand.  John had limited ability to use his hands and would for comfort position them palms up.  He was NOT begging, but the culture that the old Croatian lady had grown up in, seeing someone in a wheelchair like that, meant that she felt kindness and pity towards John.  So, she gave him a coin of hers to make his life better.  How ironic! John was President of ECCL invited to speak at an international conference on how we can change international systemic responses to people with impairments, his lived experience of moving mountains in becoming an Independent Living pioneer, was viewed by one set of eyes and reduced to a simple pitiful transaction. He called after the lady but his command of the Croat tongue was ineffective so he then sat there until his PA came back out with serious money, all that John had earnt from his labours.  This simple tale reminds me and us all that the fight isn’t won, and that those of us left now that John has passed on, carry an important torch to bear.  Its not such a heavy load when we all share the weight.

I have remained in touch with John ever since.  He became a friend, and of course, always a beacon of light and an inspiration, knowing that this latter word gets over used in relation to disabled people just getting on with their lives. John fought to the end. We must continue.

Tina Coldham
March 2026