As a new member of SDS Network, I introduced myself as a lifelong advocate for my sister. This adjective was well chosen since Pat recently left this life. I wrote this tribute. Maybe some other network members will find it has some relevance.

PATRICIA TOWELL 1936 2012

My sister, Pat, died after a short illness earlier today. Actually, only a few minutes after I had left her bedside. So I had the chance to say good-bye. She was 75. Reading Irene Tuffrey-Wijnes thoughtful book about such life and death experiences. I believe that both the NHS and especially the support staff from her group home worked hard to ensure Pat departed with dignity and in peace.

She had done very well. The first child of our parents, Ethel and Frank, she was born in East London and brought them much joy. However, not too long afterwards, she was unlucky enough to suffer serious brain damage as a side effect of a childhood illness. Thus began her 70-year career of learning to live with profound mental and physical impairments. These early years of course included the Second Word War, when the family was bombed out and moved to West London, where I was born shortly after the war ended.

This was also bad news for Pat, because my arrival was the occasion for her being admitted into full-time care reflecting the policies and attitudes of that time. Indeed she was to spend the following 51 years living in three large institutions around London until she again recovered her place in the community in 1997.

With the closure of Normansfield (a residential centre founded by the doctor who gave his name to Downs syndrome, a century earlier), she moved to a staffed group home in Richmond where she lived the rest of her life. In a sense, this last move was coming home after a long journey: her recent address is only a couple of miles from the block of flats in Feltham named as a tribute to our father and not much further from the house she had left as a small girl in 1945.

Pat never used words which means we never heard what I am sure would have been her amazing story of these many years. When Brian Rix produced his book, All About Us, to celebrate the first 60 years of Royal Mencap, I had the chance to tell some of this story for both of us in a chapter about siblings, Brothers and Sisters as Change Agents. My theme was about how her experiences and my experiences of her, helped to inspire the social movement which sought the closure of institutions and a life of equal citizenship for all disabled people.

Her recent years were one small demonstration of success in this endeavour, although there is still a long way to go for too many others. In a format borrowed from Helen Sanderson, Pats last one page profile records that people like and admire her calm and quiet nature, her dignified appearance and her capacity to communicate through intensive eye contact. She was still trying new experiences, for example, intensive interaction. She enjoyed a wide range of music, from Rachmaninov to Rihanna. She liked to relax to the changing patterns of multi-coloured lights in her own room.

Pat lived a life she never chose. Despite this she brought the gifts of tranquillity and attentiveness to her home and all those around her. She will be greatly missed by many, especially her brother.

David Towell 16 January 2012