[L]abels are for tins not people – Cally Phillips, A Week With No Labels
Let me take a couple of paragraphs to ease you into this week’s article. I watch a lot of science fiction. New stuff or old I’m really not fussed although if you want to label me I’m more of a Trekkie than a Star Wars Geek. Over the years science fiction has changed considerably and one of the main areas is that of tolerance. On Wednesday evenings my wife moderates an online forum for an hour during which I get to watch a ‘Jimmy programme’ so for the last few months I’ve been working my way through old Outer Limits episodes from the original series that was first aired in 1963. To say they’re dated is an understatement: the women are all helpless and in almost every one where there’s an alien the first thing people imagine is that it’s out to kill them whereas in the Star Trek: The Next Generationuniverse they usually give everyone the benefit of the doubt and women are frequently cast in positions of authority. Sometimes they’re both wrong in their assumptions and that’s the problems with assumptions—we’ve all heard the old joke about the you, me and ass—they’re sometimes way off the mark. Aliens can’t help that they’re different to us but there’s one thing that’s common across all science fiction: 99% of the time the humans don’t like to be called aliens—everyone else has to wear that label.
So what’s this got to do with today’s book which has nothing to do with science fiction? Quite a bit actually. Because the subject is disability. And the disabled—or, if you want to be more PC, the differently-abled—are not like you and me; they might as well be aliens. Some have big heads and bulging eyes and talk strangely, sometimes incomprehensively:
“Does he take sugar in his tea?”
Hello, why not ask me?
I might have a disability,
But to answer for myself I still have the ability.
Just ’cos I’m not stood up like you:
Does not mean there is very little for myself that I can do…
—Michael W. Williams, Connah’s Quay
For twenty years, up until April 1998 Radio 4 ran a weekly series called Does He Take Sugar? The reasons for its cancellation were even commented on by Parliament. You and Yours, Radio 4's weekday consumerist programme, was given the remit to include disability-related coverage in its content. I mention this for a reason. Part of me actually approves of the absorption into mainstream programming because that’s how things become normalised. It starts off small: the first female newscaster, the first interracial kiss, the first disabled actor to appear in a prime-time series. My wife and I are long-standing fans of the show Silent Witness. In season sixteen a new character was introduced played by the wheelchair-bound actress and comedian Liz Carr and virtually nothing was said about her appearance or her limitations. And that’s how it should be. She’s not an alien. I had to dig and dig to find out what’s actually wrong with her because she’s doesn’t talk about it because it’s not who she is although she does admit it’s a “huge definer” of who she is.
Aliens aren’t real and so we cope just fine with them. People with physical disabilities are and although we might often feel awkward round them we quickly suss out their limitations and are often surprised by how well they manage all things considered. And then there’s mental illness. That we don’t cope with so well. We don’t like things we can’t see. If a man has lost his leg or part of his leg we might skip inviting him to kick a ball about with us in the back yard but what about a man who’s lost his mind or a part of it?
Did you know Amazon has a Disabilities Best Sellers list? I certainly didn’t and I would never have thought to look had I not seen a brief mention of it in something Cally Phillips wrote online. Who goes there to look for books? Probably people with disabilities or people with family who have disabilities. Do black people only read books by black authors? Would a gay man read a book by a transgendered author? Is a self-published author letting the side down if he reads mainly traditionally published novels? Aren’t labels problematic?
The expression ‘We’re a’ Jock Tamson’s bairns’ sounds like it might’ve been culled from a poem by Robert Burns but the nearest he got to saying that, although the expression was probably common enough in his day, was when he wrote the song ‘Is There for Honest Poverty’, more commonly known as ‘A Man's a Man for A' That’ which ends:
For a' that, an' a' that,
It's coming yet for a' that,
That Man to Man, the world o'er,
Shall brothers be for a' that.
The expression means ‘We’re all God’s children’ and it’s a fitting title for Cally Phillips’ short collection of stories. It’s a sampler—free as an ebook—and contains four short stories and an sizeable excerpt from her novel A Week withNo Labels which stands on its own quite well.
We may all be Jock Tamson’s bairns, we may all be equal under law but we are not all born equal; we are not all the same. In the book’s introduction Cally writes:
There is a scientific model which is called The Bell Curve. It’s the way we work out what is ‘normal’ in any given situation. It is defined as follows:
Noun: A graph of a normal (Gaussian) distribution, with a large rounded peak tapering away at each end.
Traditionally the Bell Curve has been used to judge ‘intelligence.’ This is fraught with a number of difficulties. In the first place defining ‘intelligence’ is very difficult. Nevertheless, people labelled with learning difficulties (intellectual disabilities or in the bad old days mental retardation) are considered outside the Bell Curve by very dint of them having an intellectual 'abnormality'. The question I ask is: Who ‘judges’ whether they are ‘normal?’ The answer: The ‘normal’ people of course. Do you see a potential problem with that?
Moron, idiot, imbecile, cretin: I used all those terms as insults when I was a kid. I didn’t realise that they meant anything other than stupid. A moron, for example, used to be the term used for an adult with a mental age between eight and twelve. He’d take umbrage if you called him an idiot; there the mental age is two years or less. In time all of these got absorbed under the blanket term ‘retarded’ which now is also seen to be pejorative and there’s a big push on to eliminate the use of the word. It’s just a word. It’s people who turn a perfectly serviceable word into a derogatory one, e.g. ‘gay’. Am I a depressive or am I simply optimistically-challenged?
The opening four stories in Cally’s book deal with four individuals:
- ‘Gary Gets to be God’
- ‘Jonjo Can't Sit Still’
They’re based on personal experience but Cally’s keen to emphasise that they’re fictionalised accounts:
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!
In an interview with Susan Price she explains a bit of the background to the stories:
I was lucky enough to get to work (and get paid) doing 'drama' in mental health and disability settings and from that I developed a creative style (and a business) using drama as advocacy. For a lot of the time I was working in a pre-literate culture. So the 'writing' was very, very flexible as a concept. But for me, the active involvement in drama and 'voicing' the unvoiced through writing was absolutely the best time of my creative life (so far).
This is, I should point out, after a career working in television and theatre—her writing credentials are not to be sniffed at—and it was only for the sake of her health (and sanity from all accounts) that she left. Everyone has something. In her case it’s ulcerative colitis and I was interested in what she had to say in one of her blogs about how this has affected her perspective:
I’m lucky in that I’ve never personally had to deal with extreme mental health issues—unlucky in that while remaining mentally ‘strong’ a certain toll has been taken on me physically—and my condition is, I believe, quite a mimic of depression—I describe it as a ‘physical’ depression—when active, an extreme lethargy caused by physiological things (a compromised immune system leading to inflammation and bleeding) so that even if I’m in the happiest of moods my body tells me otherwise. Thus I have quite a lot of sympathy for people who experience what I’d call ‘real’ depression.
[…]
I’ve worked with and been friends with people diagnosed or ‘suffering’ from mental health problems. I’ve got family members who I know have had undiagnosed mental health problems for years. The 1 in 4 statistic is conservative in my opinion. We are all on a spectrum – but the focus for me definitely comes down on the side of looking at how to look after our mental health, not how to classify or label mental ‘illnesses’
Having been optimistically-challenged for many years I have to agree with her.
Let’s meet Gary:
Let me tell you all about Gary. Which really means just list what I ‘know’ about Gary and which tells you next to nothing of his reality. Of his individual lived experience. It’s a comment from the outside. I feel uncomfortable even attempting it. But what else can I do? I have no other way to introduce you to each other. So let me give you the ‘facts’ as we see them. Gary is blind. Gary doesn’t talk. Can’t talk? His hearing is suspect. His means of communication are therefore quite limited. As is his mobility. Despite being a huge lad, Gary’s preferred method of movement is to shuffle along on his bottom. He’s usually holding a sort of scruffy security blanket looking thing in one hand, which is actually used to wipe drool because he’s not good at keeping his mouth shut, and making some kind of a noise between a squeak (happy) and a scream (unhappy.) He is usually accompanied, at least here, by a care worker. Not exactly in hot pursuit, but usually in some level of distress or bemusement. Gary is not an easy lad to ‘care for.’ Because communication is so limited.
One of the big issues facing writers of science fiction is how to paint an alien world in as few lines as possible and this is the problem Cally faces here. On Silent Witness Liz Carr simply rolled into shot—don’t quote me on that because I can’t remember her first scene—and our eyes and ears did so much of the work for us. Cally has to describe a character who is alien to us and who exists in an alien environment:
Gary is known for exhibiting ‘challenging behaviour’ all too frequently causing ‘incidents’ that have to then be ‘reported’ and so whoever is attached to Gary knows they are not in for an easy ride. To me it seems fairly obvious that Gary will exhibit this ridiculous term ‘challenging’ behaviour. Think about it for a minute. What is Gary’s world like? Or more importantly, what is Gary’s experience of our world like? At best it must be hostile and worst terrifying. Can you imagine having to move around shuffling through the dark on your bum without the ability to tell someone what you want or know what’s round the corner. I wouldn’t like it, and I’m sure you wouldn’t. I suspect we might exhibit ‘challenging’ behaviour in such circumstances.
This is one of the reasons why people might avoid reading books about disabled people and yet they’ll happily pick up books about spies or adventurers in foreign lands or spacemen, people whose lives are far removed from their own. Why not read about people with disabilities? Is it because we’re okay with different but not with less?
There is a danger when you include a disabled character in a work of fiction that you become preachy: no one likes to get preached at. If I want to get preached at I’ll go to church. That said people don’t just read to be entertained; they read to be informed, to be educated, to be made to think, to see the world from a completely different perspective. And we don’t really get that because we don’t get to be inside Gary’s head. The narrator is our conduit. It’s like when she talks about Heather:
The game Heather likes to play is Animal Noises. And since she’d had such a poor start to the day, it seemed only fair to start with that. You may think you see a problem here. Heather can’t make any recognisable noise. And she can hardly move. Note ‘hardly.’ It’s all a question of how deeply you look. How profoundly you pay attention. Over time we have noticed that there is some movement. She can hold my hand. She doesn’t squeeze hard but she is doing the holding, it’s not me holding her. She can wave that hand about a bit, for a short time (when she’s not holding mine obviously) and she can stretch her neck and put out her tongue. With effort. Beyond that, like so many people with profound and multiple disabilities, she talks with her eyes. I’m still learning how to read eye-talk, it’s not that easy, but believe me, it can be done. It just takes more effort. Well, you don’t just leave someone on the bus now do you? You don’t just ignore the only way they can communicate? You learn. You try. You go to where they are. If you can’t meet them half way, you go as far as it takes to meet them. Well, that’s what I do. That’s nothing other than common sense and common decency in my book.
I have, as many of you know, a cockatiel and, over the years, have been constantly amazed by his ability to communicate with me. You wouldn’t think there’d be much to see in those beady little eyes of his but you’d be wrong there. There’s a mind. People use the term ‘bird brain’ as an insult but clearly these people have never spent much time with a bird.
As far as stories go there’s not much of a story to any of these first four pieces. They all lead up to a moral—Gary does indeed get to play God and we’re told why that’s important—and so, yes, they are a bit on the didactic side. Part of the problem is that, although fictional, because of the setting they feel more like factual accounts, memoirs. The group is where we expect them to be, sitting in a circle with the similarly-ably-challenged—a scene from One Flew Over the Cuckoo’s Nest just jumped into my mind, the one where McMurphy is trying to get everyone to vote to watch the game—and so we are already in a, for most of us, alien, if-not-clinical-then-at-least-institutional environment.
Jonjo’s story is better because he gets to narrate part of it himself. There are obvious reasons why giving Gary and Heather a ‘voice’ would be problematic but if animals can speak for themselves—I’m thinking of Grant Morrison’sWe3 and The Plague Dogs—then why not? But here’s a bit of Jonjo for you. Jonjo, before we start I should mention, is twelve and has ADHD:
[B]reaking a rule is a bad thing to do. And accidents do happen, my brother Bruce says. And one happened to me. While I was running. I don’t really remember it that well because I was in the middle of the happening so I couldn’t see what was going on, but Bruce says that I hit the car and bounced off the windscreen and nearly flew over the roof (which is kind of cool because I didn’t think kids could fly unless they were Peter Pan and he’s not real) and then I crumpled on the ground. Like a rag doll, Bruce says. Or it might have been a rag dog. I can’t remember. Either way. I like the flying bit of the story more than the rag bit. And I didn’t feel much like a rag. I felt like something which had been squished and flattened. Like when I dropped a big bit of concrete on my finger, but all over my body. Next thing I knew I was in this bed in the hospital. And it was nice and white and the sheets were crispy and the lights were sort of floody and there was another boy in the next bed. And I wanted to get up and run. And I couldn’t move. I couldn’t run. I was stuck. Like in a prison. But the prison was my own body. It wasn’t nice. It was my accident. Well, dad says it was the ‘consequence’ of my accident.
And everyone wanted to know ‘the reason’ why it had happened.
‘There is no reason to an accident,’ I said.
And then they all started on the same old story, ‘what’s wrong with Jonjo?’ ‘Why can’t Jonjo sit still?’ except now I couldn’t even sit at all. I had to lie down. It was awful.
This I liked better.
Angus has Asperger syndrome and we’re quite used to characters in fiction who have Aspergers. They’re quirky and often provide comic relief because they take things literally: Abed from Community or Max from Parenthoodor, probably the most well-known example, Ray from Rain Man. Angus isn’t interested in most things but the things he is interested in he’s very interested in:
The ‘facts’ as they are written down on his ‘profile’ are thus: ‘Angus acts like he isn’t interested.’ What value ‘facts’ eh? Of course, in a way he’s not interested. He’s not interested in many of the things you and I are interested in, but he’s very interested in the things he’s interested in – things you and I can’t be bothered to spend time on. For example, would you spend hour after hour looking at tin foil? Would the telephone area codes across the world be fascinating to you? … but what harm is Angus causing by his interests? Okay, when he blurts out some facts about the D-Day Landings randomly in the middle of a conversation on something seemingly unrelated it can be annoying but just because he’s ‘inappropriate’ doesn’t mean he’s not interested. He just has poor social skills. And I suggest that in dealing with Angus most of us exhibit pretty poor social skills. We don’t give him credit. We expect him to fit in with us. Why should he? Who is to say that his interests are more or less worthy than my interest in nineteenth century popular fiction or your interest in embroidery/horse-riding/sports. Each to his own, eh? We’re all Jock Tamson’s Bairns.
This is less of a story and more of a character study and hence probably the most preachy of the four standalone pieces. And, of course, it makes good points—there are plenty of good points to be made—but I would’ve still liked to see Angus do something. The whole problem with the does-he-take-sugar mentality is that it talks over the heads of the disabled and perversely that’s what happens here: Angus is talked about. In the first two stories more of an effort is taken to talk for the individuals in question. This is why the story I liked best here was the one where Jonjo gets to speak for himself.
The five episodes that comprise A Week with No Labels were originally released on Kindle between the Monday and Friday of National Learning Disability Week back in June 2012 and were later collected into a single volume. ‘Monday’ is included in this sampler.
The feel here is different. Whereas the short stories focussed on an individual here we have a group run by a woman—her ‘label’ is ‘facilitator’—called Kate. The No Labels Drama Group consists of, in part:
ANNIE Is a forty six year old woman NOT a child so please don't treat her as one. She is an excellent natural actress and could give Meryl Streep a run for her money.
BARRY Is in his sixties and loves a good drama. He is the leader of the gang and demands the same high level of commitment from others as he puts in himself. Some may say he's a dreamer, but he certainly gets things done.
BILBO is in his fifties and likes to dance. Oh how he loves to dance. And no, he’s not a hobbit. Here’s the story. He was christened William Robert. He was known as Billy-Bob by his dad. His brother misheard this and called him Bilbo. The family compromised on Bilbo. It was just a hobbit they got into and it stuck.
DEIRDRE Doesn't like being called 'spazzy'. Okay so she's got a 'lazy' arm but that's no reason for abuse. She suffers from tunnel vision (and when she's around it seems to be catching) She likes to read, write and organise others.
MANDY Takes everything literally. Everything. Which can get her into a lot of funny situations. And some not so funny ones.
STEVIE Is in his twenties. He likes colours. He doesn't like talking but he's a whizz at mime. His favourite colour is brown and his favourite texture is crinkly.
That’s about half. Maybe it’s because Cally comes from a theatre background but I really appreciated this dramatis personæat the beginning of the book because it’s easy to lose track of everyone. The problem with the ebook, of course (the problem with all ebooks), is that you can’t keep your finger stuck in the front so you can flip back and forth as necessary. Groups are hard to write. I’ve never tried it. I have no idea where I’d start. I always feel sorry for those actors in Shakespeare who have maybe one line and yet have to hang about on stage trying to look interesting. On stage at least you can have a wee keek to see what they’re up to but on the printed page it’s not so easy to keep all those plates spinning and I do have to confess I did lose track a few times but that’s me; I freely admit that I struggle with (and find myself disliking) stories where there are too many characters. This is an entertaining piece though and the best thing in the book because we get to see these people in a real life setting, preparing for and performing in a play. It has the feel of the kind of thing our kids might do on a rainy Sunday afternoon—devise an entertainment which is full of mistakes and bad acting—but that’s part of its charm too.
My main problem with the book as a whole is that it’s about disability. It’s not just that there are disabled characters there. Virtually everyone in the book has some physical and/or mental problem; it’s hard enough to avoid the elephant in the room but when you’ve got a herd what’re you going to do but get trampled underfoot? This is not our world. This is like reading about pygmies in the Congo (or would that be short statured Congolese?): fascinating but still completely alien. There is a long list in Wikipedia of books where at least one of the characters has mental health issues. I’d tried to think of a few while I was writing this and was disappointed that Of Mice and Men at least didn’t jump to mind. The equivalent film page is much better organised.
This doesn’t mean that the book is not a worthwhile read because it is. I don’t suffer fools gladly and I can only imagine what it would be like being disabled and living in an idiocracy where every day they have to explain the blindingly obvious to someone who should know better. Jock Tamson’s Bairns is well-written, accurate, entertaining and sobering too. If it’s preachy—no, it is preachy—it’s because it needs to be. And just for a moment spare a thought for all those preachers out there who heave themselves up into their pulpits and repeat what they’ve said time and time and time again but whose words fall on deaf ears.
I think the novel A Week with No Labels would be the better read—this is only a sampler—and, of course, there’s nothing stopping you buying the book as soon as you’ve read that first chapter; that’s the beauty of the Internet. As a taster though—and for free—this is a decent introduction to the subject and the writer. You can download a copy here. A Week with No Labels is available here for a not unreasonable £2.99. In her review of the novel Julia James said “this modest production may be the most significant book I’ve read on my Kindle this year.” You can read her full review here.
***
Cally Phillips was born in England of Scottish parents. Now settled in Turriff, she has lived most of her life in Scotland. Educationally she has an MA (Hons) in Moral Philosophy with International Relations from St. Andrews University and an MSc in Applied Psychology of Intellectual Disability (Portsmouth) as well as a PG qualification in drama from Academy of Live and Recorded Arts, a PG Dip in Multimedia Design from Napier and an Open University Diploma in Health and Social Welfare.
She has been writing professionally for twenty years and has had drama broadcast on TV and radio as well many plays for stage. She was artistic director of Bamboo Grove Theatre Company from 2002-2006 and has worked with a variety of mental health/learning disability groups on creative projects. She has undertaken residencies with Dumfries and Galloway Arts Association and West Lothian Youth Theatre as well as teaching many creative courses from dramatic/screenwriting to digital film editing and production.
She is currently the director of the Edinburgh ebook Festival which takes place in August and is working for Ayton Publishing Limited preparing a major new catalogue of Scottish writing which will be launched in 2014: “I’m nearly 11 volumes into my first 32 volume collection of ‘Forgotten Fiction’ – copy editing, introduction writing and general obsessing over publishing and history on a daily basis.”
She is the author of four novels, four collections of short stories and five books of plays including Bond is Back where the action takes place during a Bond-themed party that is more Abigail’s Party than Casino Royale.
You can read more of her work on the McStorytellers website.