Teaching the importance of compassion, empathy and kindness. @fparkerswords Reviews Stephen From The Inside Out by @Sooz_Stead

Today’s team review is from Frank. He blogs here https://franklparker.com/

Rosie's #Bookreview Team #RBRT

Frank has been reading Stephen From The Inside Out by Susie Stead

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For me, reviewing this book presented a dilemma: should I judge it on its literary qualities or on the effect of the subject matter on me as a reader? In the end I chose both options.

The first is easy: Susie Stead has demonstrated, in her first published full length book, that she is a talented writer. She relates Stephen’s story in a way that cannot fail to draw the reader into his extraordinary life, at the same time, revealing a great deal about herself.

As for subject matter, I need to begin by defining genre. In the strictest sense this is a biography: Stephen is a real person and this is his life story. But the biographies that most people read, that most publishers are only interested in, are of people who have already caught the public imagination. ‘Celebrities’ of one kind or another, however well deserved their celebrity. As the author reminds us in her final paragraph, “[Stephen] said his life was a waste of time but he lived it as if every particle of it mattered.”

It is also, in part, Susie’s autobiography as she compares her own early life with Stephen’s and as her personal life changes in profound ways, independently of, but in parallel with the later years of Stephen’s.

So who, then, was Stephen? Why is his life story important – much, much more important than that of any ‘sleb’?

When the author first met him, in 2000, she was a vicar’s wife residing in the Home Counties of England. Stephen was a 45 year old inmate of a psychiatric hospital, attending a day centre which Susie and a group from her husband’s Church had decided to visit. Susie struck up a conversation with Stephen. Her friendship and advocacy for him continued until his death in 2018. In 2014 she decided to write her book about him. He agreed to allow this. The book is peppered with his responses to sections of the book she read back to him as his story progressed.

But this is not just the story of one disturbed individual’s tangles with authority, it is also the story of changing attitudes to, awareness of, and treatments for autism/Asperger’s, schizophrenia and mental illness in general. By 2000, Stephen had spent most of his adult life in institutions, 18 of them in the same psychiatric hospital. For most of that time his status was that of ‘voluntary patient’ – except that he was informed that, should he discharge himself, he would immediately be ‘sectioned’, meaning that he would still be a patient but now subject to release only when the professional staff deemed it ‘safe’ to do so.

Official policy on the treatment of mentally ill people in the UK changed significantly between 1955 and 2000, with a plan to significantly reduce the number of individuals detained in this way. Most were henceforward to be cared for in a community setting. Stephen’s story tells us a great deal about the practical implications of such a policy when pursued without adequate resources.

The book raises many questions about personal autonomy and the freedom to choose how one lives one’s life. Under the most recent legislation in the UK, every patient/client of a care organisation has to have his/her views, and those of family and informal carers, taken into consideration when decisions are made about when/where/if they should be admitted to a care home. What if such views are unrealistic in regards to the safety of the patient/client in their own home? Where do you draw the line between a desire to achieve the best outcome for someone, based on compassion, and unwarranted interference in that person’s chosen way of life?

Whilst considering these questions I was struck by something else. In addition to Susie, Stephen had a number of individuals who not only cared about his welfare but were able to articulate their concerns to the professionals and to assist him as he negotiated the labyrinthine bureaucracy they tend to hide behind. There are many who are not so fortunate, who either do not have anyone to speak up on their behalf, or whose close relative(s) that may wish to do so lack the confidence and determination such advocacy requires.

Stephen’s story, as told by Susie, is full of highs and lows. There are many farcical episodes that brought a smile to my face. Other incidents that made me sad or angry by turns.

It is said that autistic people experience the world differently from most of us. That is a statement with which I have some difficulty. I have similar reservations about a term I have recently seen used in articles by and about people diagnosed with Asperger’s: ‘Neuro-typical’. The implication of both is that the majority of people, those without such a diagnosis, all perceive the world in exactly the same way. My own opinion is that we all exist on a spectrum somewhere between ‘sanity’ and extreme mental illness, between ‘normal’ and ‘batty’ in our habits and foibles.

Stephen’s view of the world is certainly unique. He has an understandable fear of hospitalisation. He believes that various individuals and organisations are out to get him. And yet he is capable of holding perfectly rational conversations about politics and religion. He writes poetry. By the end it is his physical disabilities, rather than his mental illness, that proves to be his downfall.

Long before the end I came to regard Susie, and the other men and women who care about Stephen’s welfare, as something of a saint for the way she and they put up with Stephen’s constant demands, expressed in phone calls the frequency of which would have driven me to distraction.

The same goes for the professionals who are legally responsible for his care and treatment. At least most of them are able to move on as their careers progress or the care contract expires. Not that Susie sees herself in that light. On the contrary, she clearly wishes there was more she could have done for him.

I could  not help feeling guilty at my own inadequacies as a son and brother. What might my own response be should any of my siblings, my wife or son find themselves in Stephen’s predicament?

Why is the book important? Because it demonstrates how knowing someone like Stephen teaches the importance of compassion, empathy, or just plain kindness. Perhaps we all need a Stephen in our lives. As Nick Knowles says at the end of every episode of “DIY SOS: the big build”, ‘perhaps you know someone who needs your help.’ Read this book and be inspired.

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‘In our love, however little, we create a web that breaks a person’s fall.’

“Susie, my life has been a complete and total waste of time”.

In 2012 when Stephen said this, he believed it to be true. But was it? And how do we decide?

From the outside, it may have looked like this. Stephen spent 25 years inside British psychiatric wards, was finally diagnosed with autism in his late forties and never felt acceptable in the ‘normal’ world.

From the inside, though, here was a man with powerful convictions, deep longings, wide interests and an incapacity to be anything other than himself, whatever the cost.

This is his story, inside and out; a story of grave injustices, saints and bigots, a faithful dog, a wild woman, a fairy godmother and angels hidden in plain sight.

It is also the story of the author, Susie, who started off by wanting to ‘help’ Stephen ‘get better’, and instead found herself profoundly challenged by a friendship she did not expect.

Idiosyncratic, unorthodox, tragic, yet at times hilarious – this book not only tells a compelling and important story but will be vital reading for anyone who cares about mental health in our contemporary world or who might just be open to a different way of seeing: from the inside out.

AmazonUk | AmazonUS

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