A Week With No Labels by Cally Phillips.... various reviewers.

This is a bit of a cheek. I know it. But sometimes one has to do what one can, and this week it’s Learning Disability Week. And this year, thus far, I’ve done nothing about that. So I’m going to step over the line and post  a series of ‘reviews’ of ‘A Week with No Labels’ published  first as episodes during LD week 2012 but now available as ‘omnibus’ ebook and paperback (with additional ‘days.’)

The first two reviews are by AE’ers Julia Jones and Bill Kirton, and of the others, I know Brendan Gisby and the others I have no idea who wrote them (didn’t even know they existed till today when I went to find Julia and Bill’s.) I’m hoping that in the spirit it’s intended all the reviewers will be happy for their reviews to be posted here (I can’t afford to be sued!) and I hope that reading them might encourage people to think for a moment about ‘Learning Disability’ and maybe, just maybe, buy the book! (Cally Phillips)

Julia Jones Reviews:

This is the story of the No Labels drama group. Most of the member s have learning disabilities of one sort of another but the writers gift is to work WITH the disabilities to make plays that are humourous and also political.It's a campaigning book that doesn't seek to deny the difficulties people encounter if, for instance, they have a problem reading, managing money or speaking clearly but pleads for them to be given the help that the want, not the help that other people assume that they need. It's an important distiction, made here with clarity and compassion. I first read this book in its component sections during learning disability week. It was a lovely idea to offer a section a day for five days but I think the 'omnibus edition' does more that its parts. The additional material (a weekend away with the No Labels drama group) adds depth to the central argument. Although this is a work of advocacy it's also an entertaining and humane read. Try it.

Bill Kirton reviews

 This review is from: A Week With No Labels (Kindle Edition)

These are 5 episodes chronicling the work of a fictional drama group (called No Labels) which are based on real work done by the author in collaboration with a beguiling, attractive, varied bunch of people tagged with the label 'learning disability'. It's a great read - funny, entertaining, but also thought-provoking in the best sense of the word. With each wee adventure, it gently challenges your perceptions of people, labels, and the values on which our society SEEMS TO run. I've just finished reading it and the characters are all still vivid for me. I know they'll stay that way for a long time, too.

Groundbreaking!, Reviewed by ‘the Bub.’

This is a very important book. The author introduces us to the background to the book, inspired by the real 'No Labels Drama Group' funded by an advocacy group run by adults with leaning disabilities. The book however is about a fictional 'No Labels' Drama Group inspired by the real 'Boaloian Drama Group' which the author explains is based on the work of Augusto Boal, founder of the Theatre of the Oppressed Movement.
With an introduction to the cast and with the author as the group's facilitator we are taken on a journey of a week of drama in which the group work out and perform various plays usually those dealing with important issues of the day affecting the group and society in general. These are reworked or reinterpretions of well-known plays or stories. But really you need to read it in order to appreciate the sheer hard work and fun that goes into the plays from the costumes to the characters themselves, to the prompts that bring this series of plays to life.
On Monday the group define themselves and decide 'labels are for tins not people'. This is an important recurrent theme throughout the week. Of course, we soon understand that it is a micro week and one Monday is an amalgamation of many Mondays and so on throughout the week. The No Labels Group decide they want to put on a 'real play' with 'real characters' at a 'real theatre' with a 'real audience'. Something like Shakespeare. No pressure there then for their facilitator! But she and the group rise to the occasion. What follows is a hilarious adaptation of Hamlet (I won't elaborate any further as I don't wish to spoil it). That is Tuesday taken care of. Wednesday is Politics and our group performs to the Scottish Parliament for Disability. They have a message 'politics is rubbish'. Yes, the No Labels team put on a play with a message about reducing, re-using and recycling. The theme of Thursday is about choices - real and informed choices - and again takes the form of a new angle on an old story: The Emperor's New Clothes. Friday is recycling day in the form of a musical: recycling songs in the group's own adapted version of Aiken Drum.
Whereas the weekdays, Monday to Friday, are full of scheduled activities for the No Labels Group their facilitator (the author) is shocked to discover (as we are as readers) that 'for most of the group a care package doesn't include activities on the weekend'. She wants to redress this and one weekend the No Labels Group are invited to put on a play about healthy eating at a hotel. I think this has to be my favourite part of the book as we share in the freedom, spontaneity and novelty of people, most of whom have never been away before. It is like a holiday to them and free of their usual constraints, amazing things happen to all concerned, not least to our facilitator, and new and deeper friendships are forged.
The book is written in a chatty, colloquial style, directed at you as reader. It is a style you either get on with or you don't. Fortunately, I do. I have in fact written a book myself (under a pseudonym) in a very similar style because that book, as this, lent itself to it. Having written in such a style I'm also aware of the diverse reactions it can produce. Mostly it is engaging, immediate and humorous. Wearing my editorial hat for a moment, there were quite a few punctuation issues. I encountered many unclosed quotes and brackets which were a bit distracting but maybe this is just in the print version and I'm sure the author will pick them up on the next printing.
That aside, I learned a lot from this book. It was enlightening, entertaining, fun and carried an important message. This is what you are left with and what you will take away. I have to take my hat off (editorial one and all!) to the author and the No Labels Group. They clearly have bags of imagination, energy and ideas and I'm already missing them.

Who you gonna call? NO LABELS, reviewed by F.Z.Flynn 

I've just spent a week with A Week with No labels. A week in the company of the No Labels theatre group and its inspirational cast as they work their way through a Biblical week of off-beat, touching , and often hilarious theatrical productions never before seen.

I must say right off that this is a good book. Good in both senses of the word. First, as in the sense of entertaining, funny, well-written. But also in the deeper philosophical sense of the word. Of giving to the other. Of the sharing of experiences. Of finding yourself, of finding God in the world. I think this is the heart of the book, the heart of the matter, the heart of all matters. It's making the revolution the only way one can. Day by day, hour by hour, in the midst of the world. I also feel that for Kate, the narrator and guide throughout the week, there is something of Hamlet in the story. To be or not to be. The question of questions. To find yourself in life. To take possession of yourself through using your talents to enrich the lives of others. And in this, this book, and by extension the whole project on which the book is based, obviously succeeds.

There is something you should know before we go any further, though I have not nor do I plan to comment on this aspect. The author says in the introduction:

"NO LABELS is a fictional drama group. I have worked for ten years with a "real" drama group run "for and by" adults labeled with learning disabilities and many of the experiences fictionalized here happened to us. Many didn't. But in this story I am a fictional character too! If there is any resemblance to real people in these fictional characters I'd say it's only the good bits which are "real". I've made up the bad bits!"

What I most enjoyed in the book was the comedy. And the underlying chaos. The brilliant anarchy. The narrative voice makes you feel like a privileged member of the audience. You laugh, feel sad, want to join in the silly songs, want to spend a weekend with the cast wolfing into anything edible on offer. I loved the Murpyesque mock philosophical debate about fairy cakes and cupcakes. I wanted to join in. Is a cupcake posher than a fairy cake? What the hell is a muffin, then? Why in my adopted language, Spanish, do we call them Magdalenas? (see, I'm joining in already).I heard that they became popular in Spain after Proust wrote about recalling his childhood after smelling a Magdalena soaked in tea. Or was it a cupcake. Or a fairy cake? That's how good this book is, that's the power of No Labels, they lead you from hoovering up tea and cakes (they're good at that, loved that line) to Marcel Proust. Who you gonna call? Yeah, that's right, NO LABELS.
I also really loved the adaptation of Hamlet, Piglet. Sorry, Piglet! This, in my opinion, is the high point of the book and the part where the writer's skill in using her voice to guide the reader through the action, always seeming to be tottering on the edge of some anarchic catastrophe, is at its best. This is another aspect of the book that jumps out at you. The visual power of the narrative. You can see, see, see everything from your privileged seat in the stalls, or in the Gods if you're more of a cupcaker than a fairy caker. I would have loved to see the actual play. Even now, writing this, I'm laughing at the whole mad idea. "Murder most foul", "Somone's had their bacon", "Something's rotten in the state of Denmark" . Horatio Pig, Polony Pig, Ophelia Pig, Queenie Pig (!) and, the best of all, Ghosty Pig.

Piglet is just one of the days and there are six other equally uproariously funny days to choose from. Download this great little book. I can guarantee you won't be disappointed. In fact I'm sure it will leave you wanting more. A Week with No Labels is not only a good read; it's also a sort of antidote to the desensitized little Britainesque sense of humour that seems to have swept down and taken over the UK in the last few years. This is a different read, a breath of fresh air (except during Piglet!) and the only label involved is that of a right good read.

Reviewed by Brendan Gisby.

I downloaded the five episodes of this omnibus as each one was released on Kindle between the Monday and Friday of National Learning Disability Week back in June 2012. I had no idea what the episodes were all about, but I downloaded them anyway out of a sense of duty; my token support for Learning Disability Week, I suppose. Some time later (well, quite some time later, I'm ashamed to admit), also dutifully, I began to read the first episode, "No Labels on Monday", not expecting much from what I regarded as a chore. Boy, was I wrong! That sense of duty turned rapidly to one of pleasure, and pretty soon I was devouring episode after episode, looking forward to the "hit" that each would supply.

These accounts of the work of the No Labels Drama Group aren't just entertaining; they're truly inspirational. You would need to have a heart of stone if you failed to take immediately to the members of the group. They are fictional characters who are based on real people with real disabilities. So yes, of course, they are frustrating and exhausting to manage. And yes, of course, they need to be coaxed and cajoled and bribed with copious amounts of chocolate biscuits, fairy cakes and sticky buns. But that doesn't make them any different from so-called normal people. Observe what happens at a typical management team meeting when a plate of cream cakes is placed in the centre of the shiny boardroom table, and you'll know exactly what I mean.

You would also need to have a hide of rhino if you failed to absorb the messages conveyed in the group's work, to rise to the clarion call, "Labels are for tins, not people!" The messages are clear and unequivocal: don't apply labels to people who are different; enable them to make informed choices about their lives; and never, ever treat them like children.

Then there are the dramas performed by the group. I don't want to give too much away, so I'll say simply that every play is both inspired and inspiring, as well as very, very funny. When the performance of the first one, "Piglet!", opened, I experienced one of those jaw-dropping moments I won't forget for a while. If by the end of each play you aren't singing and cheering along with the fictional audience, then you really are devoid of all feeling, my friend.

But what holds all this together, what makes it so much more than the sum of its parts, is the writing. My hat goes off and stays off to Cally Phillips, whose skill at narrating each performance step-by-step is nothing short of electrifying. I was going to say that reading her accounts is like experiencing a maestro conducting the 1812 Overture, but that would be too highfalutin. It's more like watching a juggler spinning plates - and the number of plates keeps on growing and growing. Or like following Henry Hill's crescendo-like narration in the closing scenes of "Goodfellas". Unlike poor Henry, though, Cally Phillips gets high on words, not coke.

So please don't follow my lead. Don't let this book hang about on your Kindle. Read it now. Meet the No Labels Drama Group. Learn their messages. And stand by to be mesmerised by their performances. To paraphrase Piglet... sorry, Hamlet... the plays are the thing!

You can buy A Week With No Labels as ebook or paperback from Amazon

£6.99 for the paperback and £2.99 Kindle /

Review of A Week with No Labels

(Please note this review was originally written in 2012) 

In some ways I think that this modest production may be the most significant book I’ve read on my Kindle this year. That’s without denigration or disrespect for all the other varied, entertaining, profound and clever books that are magically stored in its flat grey space. A glance at my home page shows me that I’ve read about thirty epublished books, mainly novels, in the seven months since I began clicking pages as well as turning them. There’ve been some real treats and some exciting discoveries – books I almost certainly wouldn’t have come across if I’d not been led to them by either Authors Electric or the Indie eBook Review. Thank you fellow writers – I hope you know who you are.

However, most of these ebooks I’ve read and enjoyed since January 2012 could equally well have been paper-published. (As many of them previously were.) The ‘No Labels’ series is different. They were first published in June from a Monday to a Friday to mark Learning Disability Awareness week. This isn’t something that a book publisher would do. It’s actually more akin to journalism. You could imagine the Guardian or the Independent publishing some neat little A5 size 16- or 32- page booklet inserted into the main paper every day for a week. But would it be fiction? Probably not. Connected with learning disability? No. Would any commercial publisher, even in their most expansive moments, have considered bringing out these lightly fictionalised reports of a drama project involving nine adults with learning difficulties, one volunteer and a paid facilitator? Somehow I don’t see it.

E-publishing would make it easy to produce similar volumes now, if, like Cally Phillips, one had the energy and commitment to put in the hours of writing and production time and didn’t expect to make money. It’s open access. The new format makes it possible for anyone (with appropriate help) to record their own life-story, or publish their own novel. Not everyone has welcomed this indiscrimination. Personally I was often sad to have to say to ‘my’ oldies. “No, I’m sorry, I loved your essay but I’m not going to publish the thirty chapters of life story you have in your bottom drawer. I’m sure your grandchildren will come to them one day, or you could deposit the copy in your local record office.” If people dream of publishing their own book I’m glad that now they e-can.

What the ‘No Labels’ series is doing is different from such self-publishing. You could almost call it un-self publishing. It’s the report of a project and it’s a campaigning publication. It seeks to change attitudes to learning difficulty by telling stories – simple daily stories, like the story of Annie taken to the shops to buy a present for a friend but not allowed to buy the present that she chose, then not allowed to buy the meal that she chose, then obliged to buy the meal for the person who was paid to accompany her (and who naturally chose what she wanted to eat) and then finally not allowed to go to the party of the friend for whom she’d bought the present because the care rotas had changed so there was no one available to be paid to accompany her. There are disturbing, unexplained vignettes, such as the moment Mandy sees a certain carer in the audience and freezes in terror. There are depressing moments of insight as when the narrator discovers how easy it is to organise an event for a weekend as the residents of the care homes have absolutely nothing else happening.

There’s quite a lot of protest voiced directly through the persona of Kate, the narrator. She’s the facilitator, she’s paid and in addition to her play-writing and improvisation skills she’s a shrewd analyst of conversation. Even conversations where the other person chooses to confine herself to ‘yes’ or ‘no’. “Is that a nono or a yesno?” Kate asks, offering her interlocutor the chance to vary the pattern of communication within the rules of her chosen conversational game. If this sounds complicated, read the book. Cally Phillips is very good at re-defining what might appear to be intelligence (lack of) issues as misunderstood communications. She convinces me that the people in her group have no lack of senstivity or imagination but as their efforts to express themselves are not usually understood, they have largely given up trying. They relapse into monosyllables, they comfort-eat, they exhibit ‘challenging behaviour’.

Members of the ‘No Labels’ drama group also campaign directly, as a group. They go to the Scottish Parliament and perform a play called Politics is Rubbish. It’s about re-cyling, it’s about systemic failures and it has the sad subtext that the ‘No Labels’ members suspect that they are seen as society’s cast-outs. They have problems with ‘normal’ living – with reading for instance, or managing money. They accept that they need help but they long to be helped in the way that they want to be helped. Which isn’t necessessarily the way the system decrees. Through drama and the comradeship of their group they are able to express themselves, entertain others and make valuable comments on the way we live normally. They have gained a new way to communicate.

The depressing aspect of A Week with No Labels is that it springs from a project, from more than one project (the timeframe is unclear) but projects have a bad habit of coming to an end when their funding runs out. Perhaps I should stop reading now and leave the ‘No Labels’ group enthusiastically on their weekend holiday together with the performance still ahead of them. Treat it like fiction with a possible happy ending — instead of accepting that this humane and humourous publication is a furious polemic

 Reviewed by Julia Jones 

Available in Kindle format and epub format 

Find out more about Cally Phillips 

Jock Tamson’s Bairns by Cally Phillips

Review by Chris Longmuir

This book was a free offer distributed by the author Cally Phillips, as a lead in to her book A Week with No Labels. 

Cally Phillips uses the expression ‘we’re all Jock Tamson’s Bairns’ to signify that, although not everyone is the same, ‘we are all equal under the skin’. The introduction to this book of short stories discusses what is meant by intelligence, normality and abnormality, leading onto a discussion about labels and who judges whether someone is ‘normal’ or not.

Jock Tamson’s Bairns is a book of short stories about people who are stuck with labels that suggest they are different from ‘normal’ people. She argues that the people who carry these labels are real people. Maybe a bit different, but equal to everyone else.

I loved the short stories in this book. They revolve around a drama group. I read about Gary, who is labelled as having ‘challenging behaviour’, but which Phillips prefers to call ‘creative behaviour’. Gary has sight, hearing, mobility and communication problems, which can exclude him from certain activities. However, when the group he is part of go on an imaginary journey, his delight at being chosen to play God, made my day as well as his and the group leader’s.

Jonjo is aboy who has acquired the label ADHD, and he runs everywhere. His story is told in his own words, and it flags up the misunderstandings that often arise, because the ‘normal’ person, the one without the label, doesn’t take the trouble to find out what Jonjo, and others like him, understand of the world about them. Then there’s Heather, a wheelchair user with limited movement, who is sometimes described a being ‘not all there’, but she is real, with hopes, dreams, likes and dislikes, just like anyone else. She likes the game of animal noises. She gets to be a giraffe because a giraffe doesn’t make any noise, just stretches its neck and sticks its tongue out, and Heather can do that. Then there’s Angus, who has Aspergers Syndrome. But Angus can do things ‘normal’ people can’t do, although despite this he is stuck in a Behaviour unit at school. Phillips concludes his story by saying ‘Give the boy a job he can do and he’ll do it all day quite happily. Treat him like a reject and he’ll behave like one.’

These short stories certainly gave me a lot to think about, and one of the difficulties in reviewing it was talking about the characters without including the labels they were saddled with. It was a salutory experience.

But before I finish this review, I want to comment on the excerpt at the end. It was quite a long excerpt, but I wanted it to be longer. It was from Cally Phillips’ book, A Week With No Labels. It describes the working of a drama group which is called No Labels. This is a fictional drama group, although Phillips has worked for 10 years with a ‘real’ drama group run ‘for and by’ adults labelled with learning disabilities. It describes the participants in the drama group, what they did on Monday, and their understanding of the labels they carry. These range from learning disability to spazzy, and how it makes them feel. The excerpt finishes with the group performing a play, and the audience going home with a message: ‘Go home and think about how you treat people. And be careful if you are in a position of power. Chickens can come home to roost.’

This is one book I won’t forget in a hurry, and I’ll definitely be buying A Week With No Labels’. I want to find out what the No Labels drama group did on the other days of the week.

Chris Longmuir

Link for A Week with No Labels

Jock Tamson’s Bairns by Cally Philips

Reviewed by Bill Kirton

When you read this book, be prepared to think; not in any heavy, academic, pretentious way, just gently, quietly, reasonably. Be prepared, too, to re-examine how you use words and how you look at (and judge) other people. That doesn’t mean it’s some worthy, ‘improving’ tome, couched in arcane philosophical or psychological terms. On the contrary, it’s a careful, uncomplicated invitation for us to take a wee step back from our assumptions, the everyday attitudes we carry, the loose way we use language. It challenges the way we create compartments, chop reality into manageable chunks, box them up and label them, even though some chunks shouldn’t be in the same box and most labels are at best inadequate and at worst wrong.

And the problem inherent in such an approach is exacerbated when what we’re dealing with is not abstract ‘chunks of reality’ but people. Cally Philips has worked a lot with people with ‘learning difficulties’. (The need to use quotation marks around apparently familiar, ‘normal’ terms is obvious from the early pages of the book.) The expression ‘learning difficulties’ has (thankfully) evolved from ‘mental retardation’ and worse because nowadays we try to be careful of the terms we use. There’s certainly been progress, but there’s still an underlying assumption that, because most of us ‘feel normal’, those who are different must be ‘abnormal’. But, as the author points out, the people who’ve decided what ‘normal’ means are – yes, you’ve guessed it – the ‘normal’ ones. ‘Normal’ isn’t a hard scientific fact; it’s a consensus.

So, we assess ‘disadvantaged’ individuals, judge them, stick labels on them so that we can accommodate them in a specially designated bit of our reality. They are ‘other’. And now we’ve dealt with them, so we can ignore them. But that doesn’t work for the author here. She doesn't keep quiet, doesn't look away, doesn't hide behind the labels and attitudes provided by others. She’s honest and says what she sees. And she chooses to use a very clearly fact-based fiction to show that the category ‘abnormal’ is as rich, varied and human as its ‘normal’ counterpart and that, however we refine the labels we stick on people, they’re still restrictive and misleading.

But everything I’ve said is outlined much more simply and accessibly in the introduction. Her style is friendly, conversational and honest and, when we move to what she describes as ‘fictional stories based on factual experience’, she continues to draw us into her revelations by creating characters and situations which, yes, underline the message but are also moving, funny and entertaining. In her own words, she’s ‘respect[ing] the real-life experience of the people whose lives [she’s] fictionalised’ in order to ‘teach insight for those of us who so badly need it’.

The first story is called Gary gets to be God and there’s a beautiful irony in the title.

Gary is blind, doesn't talk, can’t hear very well, so communication is limited. He also shuffles along on his bottom. He drools, squeaks when he's happy and screams when he’s unhappy. For us ‘normal’ people his behaviour is ‘challenging’, there are ‘incidents’, ‘reports’. It all fits a convenient pattern doesn’t it? Why can’t he be more like us? Why can’t he be ‘normal’? Cally Philips answers that with her own question, one which acknowledges that Gary’s ‘normality’ is different. ‘Can you imagine having to move around shuffling through the dark on your bum,’ she asks, ‘without the ability to tell someone what you want or know what's round the corner?’

But, in a group improvisation, with the theme of ‘where do you want to go?’, poor, powerless Gary gets to be God. It’s a beautifully orchestrated story with a poignant ending.

The other three stories work in similar ways. In Jonjo Can't Sit Still, Jonjo has Attention Deficit Hyperactive Disorder (which we all glibly shorten to ADHD and assume that the label ‘explains’ things). The impact of this story comes from the fact that Jonjo tells it himself and so we get access to his normality, which turns out to be as legitimate as ours. Philips lets him ‘explain himself’ by using a combination of his own impulses and the language other people use about him. The writing is very clever as we see the logic, the ‘normality’ of how his mind works, of how he interprets/understands expressions. He loves to run and he’s ‘an accident waiting to happen’, so he runs, a car hits him and the accident has happened. Why did it happen? ‘There is no reason to an accident’ he says. His father uses the expression ‘you’ve hit the nail on the head’ so when he tells a doctor ‘I have low self-esteem’ and sees from her facial expression that he’s surprised her, he says ‘Sorry, I didn’t mean to hit the nail on the head’.

Philips helps us to share the world as he sees it. He’s sensitive to clichés, to what others say and think. And he loves to run. So the ‘normal’ people give him Ritalin to slow him down. Then comes his first accident and he’s on crutches for a while, which allows him to share another insight. ‘Crutches slowed me down a bit,’ he says, ‘but Ritalin slows me down on the inside too and crutches only slowed me down on the outside’.

I’m doing too much story-telling, but it’s simply to illustrate how the fictions are so carefully tailored to enhance the central message with regard to the tyranny of labels. The central figures of the other two stories, Heather and Angus, have different problems again and give more examples of how badly they’re served by our preconceptions and how the differences between us and them blind us to the similarities. We are, indeed, all Jock Tamson’s Bairns – not equal, no, not by a long way, but all the same, all individuals with our idiosyncrasies and gifts, flaws and beauties. In the last part of the book, we see the fictional ‘No Labels’ drama group improvising again, interacting. All its members have ‘difficulties’, but the improvisations impose no restrictions. They can be who they are and the results show that who they are is valid. In fact, the improvisations sound like much more positive ways to pass the time than watching TV or indulging in all the other herd activities that constitute normality for the majority of ‘normals’. These are lives being lived, individuals with their own precious selves, all different, all valuable.

Labels are supposed to identify; in fact, they obscure.

Review of Focus

I would imagine that even more than for most people, those who write and those who love to read would find the prospect of going blind absolutely terrifying. And what do we do with things we fear? Ignore them as long as possible. Pretend they aren’t happening. Avoid facing up to the truth. But some stories are too important to ignore.  This is one of them.

In Focus, Ingrid Ricks writes her experience of having to come to terms with a rare eye condition Retinitis Pigmentosa and it is enough to give every reader pause for thought.  The title Focus has an immense power beyond the obvious in this work.  It reaches out as advice and a caution to us all.  Focussing is important. For us all.

Focus is told in such a straightforward, honest and simple way that you cannot help but feel empathy with and anger on behalf of Ricks. I was both astonished and humbled and the helplessness of her situation mirrored the helplessness I felt with her situation.  I do not suggest she portrays herself as a ‘victim’ in any way, I simply mean that – yes – the book made me Focus. On life and how it’s not always a happy place to be. Bad things happen.

America and UK are different in many ways and this book got me thinking of some of the differences. One of the observations I made while reading this book (which I LITERALLY couldn’t put down and I warn you, once you start it you will not be able to stop till the end it is that powerful!) was that in UK I’m sure as soon as she had the diagnosis ‘legally blind’ she would have had her licence withdrawn. But in US it doesn’t seem to be the case. I found that quite shocking but equally I didn’t want her to have to stop driving. It would have such a devastating impact on her life. That little fact helped me to focus once again on the consequences one is forced to deal with as a byproduct of a medical condition. The other thought I had was that I hated to think what it must have cost to have this diagnosis (I mean in financial terms) in America. I know that the NHS has much not to be proud of and that ALL treatment for eyes is not free anymore, but I’m convinced that if I was diagnosed with this condition in the UK among my many worries would not be how I was going to pay for the diagnosis and ongoing treatment costs. Although in the case of this condition it doesn’t seem there’s much than can be done and so that may not be a huge issue of itself. Of course, again, in this country it might be a condition which falls between two stools and she might have been ineligible for all kinds of ‘benefits’ to which she ought to be entitled.  It reminds you – life’s a lottery. Focus.

But one does have to deal with consequences even if one is in denial. Ingrid Ricks had to take that personal journey. And she bravely and honestly shares it with the reader. She did and does the best she could do.  She re-focussed. Faith wasn’t enough, and she refocused towards pragmatism. Generally speaking we all place such faith in the medical profession and it’s only when (if) we get diagnosed with a condition for which there is no ‘cure’ that we realise that conventional medicine does not have all the answers. For those of us (like me) sceptical about alternative therapies that can prove a hard time. However, for Ricks (as for me) over time one comes to terms with the fact that it’s YOUR life and you have to find what will help you live with your condition because when it’s your life the knowledge that you can’t be ‘cured’ isn’t the end of the story. You just have to re-focus. Time and again.

And often in such a journey the silver linings appear. For Ingrid Ricks therapy opened some doors.  I know we Brits are often dismissive of therapy but the therapeutic path does have value and especially in conditions which the standard medical model cannot handle.  For Ricks therapy opened doors to how and why she may have been ‘blighted’ with RP but more importantly helped her find ways to ‘deal’ with it and to adjust her life to her new reality.  In the process of this is the nub of another story – Hippie Boy – which I rushed straight away to read after Focus. I wanted to know so much more about Ingrid Ricks life and ‘backstory’ and I was not disappointed. I will review Hippie Boy early next year. Over the years, Ricks found out things about herself and was able to change her life and her priorities. This takes some strength of character and a great deal of personal insight. Her achievement is one which should be recognised and her story is one which we should all read – and use the message it gives us to apply some focus to our own lives.  Real life is less about happy endings and more about dealing with the cards you are given, even when the deck is horribly stacked against you for no good reason.  I salute Ingrid Ricks for showing the courage to do this and for having the skill and desire to write about it so that others may learn not just about the eye condition but something vital about life itself.

Reviewed by Cally Phillips

Available in Kindle format   and epub  and in paperback

An advocacy project run by Ingrid Ricks is currently running in the 2nd Edinburgh eBook Festival 

Find out more about Ingrid Ricks