“Living with a Difference” by Phyllis Mary Wolff, 1972

So many of our early memories in life have a profound effect on us and, though we don’t realise at the time, those effects go on to influence many of our future opinions and life choices.

In June 1947, my ‘Uncle Richard’ was born, my Grandparents fourth child, and my Mum’s youngest brother. Uncle Richard was born with cerebral palsy, though way back then it took several hospital visits until this was diagnosed at the age of nearly a year old. Having been born in Ireland, the family returned to their Nottingham home when Uncle Richard was only a few weeks old, and this is where they lived for many years.

I remember my Uncle very fondly, always with a smile on his face, a lovely man who was ‘confined to a wheelchair’, with very poor coordination and weak muscles in all his limbs, and difficulties with speech. Sadly, Uncle Richard passed away in 1988, aged 41, after a severe asthma attack. His life, and that of my Grandparents, my Mum and her brothers would have been so very different now (and far easier), with the positive developments in social and health care that have taken place since Richard passed away.

Uncle Richard spent considerable time, in his early years, living in residential schools many miles from the family home in Nottingham, as provision was so scarce, at a time when my Grandparents had no car of their own, limited financial resources and 3 other young children to care for. Later in his life, Uncle Richard lived in a fabulous home ‘Wilford View’ in West Bridgford, Notts, where he was as happy as he could be – however, with the knowledge I have now, I wonder what I would think about it if I was to visit today.

In 1972, Granny ‘penned’ her thoughts regarding ‘Living with a Difference’, and I picked up her memoirs to read through again recently, the first time I have read this for many years, and the first time since I have worked myself in ‘social care’. Wow, how things have developed – Granny and Grandpa would be amazed at how people with disabilities and their families are supported now, and would also be excited, as I am, in how integration of health and social care will further improve and personalise support in the coming years.

Here’s a few of Granny’s thoughts:

Whilst Uncle Richard was a pupil at a school in Croydon: “The Headmistress chatting to us said ‘Why do you not do something about this? Nottingham should have its own provision for handicapped children, and there always has to be a person to start a thing.’ Explaining that we had four children we were told ‘I think you could do it.’ And so started a chain of events which changed our lives, and I hope the lives of many other parents facing a similar problem to ours.”

“The truth was very little was known about cerebral palsy at that time. Many spastics had been classified as being mentally retarded, mainly due to their lack of speech and co-ordination of movement.”

My Grandparents were pivotal in the establishment of the ‘Friend of Spastics’ Group in Nottingham, after my Granny’s trip to London at a meeting where the ‘Spastics Society was formed. “Having never at that time visited London alone, I was somewhat daunted at the prospect of meeting strangers…..Following the written instructions provided by my husband, I arrived safely at the time arranged, only to make the frightening discovery that apart from one young lady who appeared to be acting as a secretary, I was the only woman present. I was introduced as ‘The live wire from Nottingham’, which I certainly wasn’t, in fact I was shaking at the knees for the first two hours. Harold was the one with the personality in our house, whilst I seem to have been the pusher. Over the years the combination has certainly helped, and without each other we could never have achieved the results now apparent.” The changing face of society and women’s role in it, especially when I think of the 100’s of meetings I have attended and, I hope, made a difference at, or certainly where I have made myself heard – I hope Granny would be proud.

“The school again mentioned assessment, a word which any Parent had come to dread. How could anyone assess a child who was handicapped in all four limbs, in addition to speech difficulties, unless one lived with the child, and could observe his reactions all day and every day.” Such a big change here, how both children and adults are now (should be) assessed to ensure a true picture of them as a person is gathered, as well as information regarding their support needs. I wonder what Granny, Grandpa and Uncle Richard would have thought about ‘personalised care and support planning’, about ‘one-page-profiles’, ‘asset-based community development’ and about having ‘choice and control’?

“Eventually Grandpa become Regional Chairman for the Spastics Society. The Eastern region was known as the ‘Rebel Region’, mainly for our determination not to be dominated……We never really quarrelled but we had many disagreements and why not, we were unpaid volunteers working hard for a common aim.” This continues – those 1000’s of volunteers, and also (mainly low) paid workers, in the voluntary sector, who understand, who make their voices heard and who ensure positive outcomes for those individuals they are ‘fighting’ for.

“I did not intend this story to relate mainly to my own life, with my family. My main purpose has been to try and show what can be done if one has a true sense of purpose, like so many of the parents I have met. I doubt if our ‘Way of Living’ has made a big explosion, but it may have a lit a few candles.”

“In all a great deal of help is now forthcoming and with pressure on the government, and the Social Services Department to do more, the future for families like ours would appear to look happier. But as a parent may I say that never ever must one expect perfection. Schools, centres and hospitals, whether they be run by a charity or local authority or the Regional Hospital Board, will and can only do so much, and this it seems we have to accept.”  Not ‘perfection’ maybe, but certainly more choice and control would have been good.

“It is a wonderful achievement when the voluntary and statutory bodies can combine and work together, and this is something we have always tried to achieve in Nottingham, although not always with success. The professionals still tend to look down on us although, in many cases, our personal experiences have given us greater knowledge than ever can be obtained from working by the book of rules. One occasionally can meet them on the same level, although we each have much to learn from each other, and this I feel is becoming more acceptable.” I’m sad to say that there are still some ‘professionals’ who look down on families and those supporting from the voluntary sector, but there is an increasing body of ‘professionals’ who ensure everyone has a voice, that we all work hard positively together, in co-production, to achieve the very best outcomes that individuals within our society deserve.   

“Whatever my husband and I have been able to put into our lives, has been returned a thousand-fold by the wonderful people we have met.” I would echo this comment of Granny’s. From my own experience working in social care, with voluntary, public and private organisations, supporting citizens and families with additional support needs – when you know that you have made a difference to the life of just one individual it’s all worthwhile.

And finally, Granny said about me (46 years ago!): “Sarah their five-year-old daughter has grown up knowing Richard and has consequently a completely natural approach to the physically handicapped.” ‘Uncle Richard’ was just that – Uncle Richard. He, and we, ‘lived with a difference’ but it taught us all so much – Richard was a lovely man, just one ‘with a difference’ – he taught us understanding, compassion, to put the person before the disability, and to fight and work hard for each other.