Sight loss and access to reading

Posted 13 February, 2014 by Nikki in General / 7 Comments

For a while now, I’ve been meaning to make a post about my volunteering work for the RNIB. It’s not all relevant to this blog, but certain aspects of it are. I’ve been having a hard time phrasing it, though, and finally Lynn agreed to help by asking me questions as an interview. So thank you very, very much to Lynn for helping out.

Before we start, I just want to say that while I’m talking about being a volunteer for a couple of charities, I don’t officially represent them. And while I hope that I’ve been sensitive and thoughtful in my answers, I’m aware that there’s nothing wrong with my own sight a pair of glasses can’t fix, and that I may get things wrong or mess up in some way. Feel free to tell me if I do: I’ll be glad to add corrections to my post if necessary.

That said, here’s Lynn!

I know you volunteer for RNIB/Macular Society, but what is it that you do when you’re volunteering?

Well, my role in the Macular Society is really simple: I moderate the forums. I answer questions when I can, offer reassurance if I can, but mostly just make sure there’s no spam. Which is why I’m really glad I have a more active role for the RNIB (Royal National Institute for the Blind). It’s also affiliated with the local Institute for the Blind, and we have a really good network of support out there for people who are blind or partially sighted.

My particular role involves working in the clinic and trying to ensure everything works smoothly: I’m there to help both the patients and the nurses. So if someone’s lost, I tell them where to go; if someone’s just had their eyes dilated, so they can’t see to go get a coffee or get a taxi home, I’m trained to lead them safely and comfortably; if someone’s upset, I sit next to them and talk to them a bit; if someone needs to know how much longer it’s going to be, I go and find out. I also help with the general running of the clinic. If there’s work that you don’t need to be a healthcare professional for, I’ll do it: moving files, sorting files, taking requests to the photographers, running messages… It doesn’t sound like much, but when you know how big the clinics are and how many people we move through them each week, the five hours I volunteer a week is actually a significant help to the nurses.

Can you give any rough estimates on the numbers you alluded to?

I remember being told that in one of our treatment clinics, we move 800 people through each month. And we’re sometimes running seven clinics at a time, as well as the eye casualty. Diagnostic appointments usually take longer than the treatment clinics, so the numbers are probably lower for some of those, but it gives you an idea. The waiting room is often standing room only.

For more context, everyone who comes into the clinic has to first have their ‘visions’ done — a simple eye test to compare their current sight to when they had their last appointment. There is one visions room, divided into two parts, so only two nurses are ever doing visions at one time. Some clinics have a specific nurse assigned in one of the other rooms, if it’s a bit more complicated, but most people will go through the visions room.

That sounds like a lot of people! You must be really busy when you’re at the clinic.

Reaaaally busy. I don’t know what they do when they don’t have a volunteer there, because a lot of the stuff the nurses have to do then means they take even longer to get people through the visions room. Even with me there, we’re nearly always running with a delay.

Wow! I hope they always have at least one volunteer there then. How do the people visiting the clinic spend their time waiting for their appointments?

Some of them nap, which is an entirely valid response to the waiting times! Or glare at me, which is kind of unfair but also understandable. Mostly, though, and what I really wanted to talk about, people bring a book or a magazine, or buy the paper on the way in. That really surprised me, actually: I see a lot of the rest of the hospital, helping people around, and I don’t see as much reading in any other clinic or waiting area. You’d think a badly lit eye clinic full of partially sighted people would be the last place you’d see loads of people reading, but that’s my experience.

That does sound pretty incredible! And I mean that in the most positive sense of the word. Does that mean you sometimes end up talking about books and reading with the visitors too?

“What are you reading?” is the third most popular question (after “Where is the toilet?” and “Why is the clinic running late?”) I get asked. Not that I have chance to be actively reading when I’m on duty, but reading is an easy conversation topic to help distract people or just give them some interaction time with a friendly face. When people are worrying about the effects of losing their sight, too, the idea of not being able to read is what seems to really scare a lot of them. And quite often they know very little about the options out there to help them read for as long as possible.

Does the clinic offer them information on the options they have?

The clinic doesn’t, no. Not as such, anyway. My ‘boss’, the person who coordinates all of the volunteers, has an office in the clinic for that purpose. I was taught about the assistive devices we have, but mostly if someone asks for information, it’s easiest for me to go and find her. Then she’ll arrange to spend some time with them, talking about options like that and registering as legally blind, etc.

The one thing I do talk about when I can is ereaders. I’ve been investigating the various options for several years now, since my mother was diagnosed with macular degeneration, so generally I can help people figure out the best ereader for them, and recommend places to get books. Sometimes if it’s quiet I’ll fetch my own ereader and show them how it works.

So… there isn’t a lot of information to help ensure people are still able to read at the clinic other than in a specialised consultation? Is that why you mention ereaders specifically as something you talk to the visitors about?

There isn’t. I think that’s a problem that comes out of the NHS being very compartmentalised, which is a whole ‘nother rant — basically, instead of treating problems holistically, we treat problems separately. The clinic is there to deal with the physical issues; as far as I know, apart from the volunteers, I’ve never seen anything in place to help with the emotional side of going blind. With the clinic so busy, there isn’t time.

So it’s something I bring up when I can, something I know a lot about and can share that sometimes makes it all a bit easier to handle. I know for me, if I couldn’t read anymore, I’d be devastated. I’d probably end up on (more) antidepressants and just miserable. That’s why I also advocate for large print books in libraries (including the one I volunteer in), and for access to audiobooks and so on. Which is, you know, another reason to love the RNIB: they have a Talking Books subscription service with thousands of books available. (Which always needs help and donations, by the by.)

I see. That is… very sad. I’d be devastated too. Apart from ereaders and audiobooks, what other ways have you learned about that help people continue to be able to read?

Well, sometimes really good lighting is enough to help for some people, but then there’s also a variety of magnifiers. The one I find easiest to use myself (I have tried all of the ones we have available) is one of the variety of dome magnifiers we have. You just place them over the page and slide them along, and they magnify the text as well as concentrating the light on it. There’s CCTV video magnifiers, which take the text and magnify it up on an LCD screen, and have the advantage of being somewhat adjustable, but they cost a lot. I’m talking in the region of £800. For something that’s such a major concern for so many partially sighted people, the technology is difficult to access.

We do have programs that can give people these sorts of things free, but again, it takes resources, and it depends on where you live whether you can access one of those programs.

That sounds awful! I hope as technology increases, the costs will become less prohibitive to people. So ereaders and audiobooks are pretty much people’s best options?

To my mind, yes. An ereader is easily the cheapest option. It wasn’t cheap when I first started researching — I got mine for £180, and I think the Kindle was around that price too, then — but now things have caught up. The ereader I’d most readily recommend is the Kobo Mini: I got it when it was in a sale for £24, it’s pretty easy to use, and it’s lightweight, which is often another bonus for elderly people. The Kindle’s about the same weight and so on, but it doesn’t have the same range of fonts and font sizes. There’s a version of the Kobo with a backlight, too; that or the Kindle Paperwhite might be best for people who need bright light and good contrast.

I know you’ve already mentioned this, but just so we’re clear on this and have it reiterated: different people do have different requirements in ereaders? How do you know which ones work best for who?

It can be a problem, because obviously there’s lots and lots of people coming through the clinic from all sorts of backgrounds. Some of them might not be able to afford even a basic Kindle (~£60), or they might have trouble with coordination so a touch screen might not be a good idea. Generally, I just start by mentioning that I have a Kobo and find it useful, and let them ask me questions, which tends to give me a good idea of what they need. E.g. if they say they have trouble reading on a backlit screen, then obviously I scratch the idea of recommending the Kindle app on an iPad and go for something with e-ink technology.

I see… Do you think you could give people a few recommendations on ereaders to start with? Not too many details, perhaps, but some general pointers that you’ve found the most useful.

My first recommendation is generally to ignore me and get to a shop and try them out! In the UK, WHSmith will usually have display models of Kobos, while Waterstones has Kindles. Big supermarkets sometimes have them out, too. That way you can fiddle with the font options for yourself and just see what suits you.

Good idea! Though I know that I find it helpful to have some idea of what I should be looking for before I go into a shop myself. I feel very self-conscious if I have no idea what I want or need from a shop and I’m sure it’d be much worse if I had to deal with losing my sight as well. Having some idea of what kind of ereader I should be looking for would really help me look for one.

For that, I’d probably end up suggesting chatting to other people with similar issues, e.g. on the Macular Society forums. But in the meantime I’d go through a sort of checklist: what sort of screen do you want/need? Do you want it to do other things as well (i.e. a tablet)? Write down the things you know you can’t do without (like a lightweight unit, large buttons, lighting options, fonts), and that’d give you some idea of what to ask the shop assistants. There’s usually a particular shop assistant who handles ereaders, in my experience, so ask about that and ask to speak to them if possible.

I am actually planning to do a post here sometime soon about the pros and cons of various ereaders, and if anyone has any specific questions, feel free to ask me. If I don’t already know, I may be able to find out.

That doesn’t leave me with many questions to ask, beyond thanking you for your time and wishing you loads of good experiences volunteering!

You’re the one who helped me out! Thank you for your time, Lynn.

As I said, if anyone has any other questions, feel free to ask them in the comments — if there’s anything interesting, I may add it to the post, and likewise I’ll add any corrections that may be necessary.

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What are you reading Wednesday

Posted 13 February, 2014 by Nikki in General / 0 Comments

Well, it’s kind of Thursday now, but I’ve never let that stop me!

What did you recently finish reading?
The Assassin’s Curse, by Cassandra Rose Clarke. Review coming up on the blog tomorrow: suffice it to say that I think it’s a lot of fun, and I’ve acquired the second book and the companion stories to read ASAP. Like my to read list isn’t long enough.

Before that, it was The White Queen, by Philippa Gregory, which… I just don’t get the appeal. Elizabeth Woodville was smarter than Gregory’s version, a political schemer, why does she have to melt into goo over a man? She could still be political and canny and in love, but it doesn’t seem that way.

What are you currently reading?
Longbourn, by Jo Baker; “Downton Abbey meets Pride and Prejudice“. I’m quite enjoying it. From the reviews, I didn’t expect to, but maybe it helps that I’m not precious about Austen. I do think Baker’s rather riding on Austen’s coattails, telling a story that isn’t inextricably entwined with that of Pride and Prejudice and just using the original story to garner interest. I don’t know if that feeling will stick with me.

Also, Delusions of Gender by Cordelia Fine, because it’s high time I got round to that.

What do you think you’ll read next?
Joanne Harris’ The Gospel of Loki — just out today! I have promised Joanne Harris that I won’t mention a certain actor’s name in my review… Also, obviously, A Pirate’s Wish by Cassandra Rose Clarke.

I’m also interested in Jonathan Haidt’s The Righteous Mind: Why Good People Are Divided By Politics and Religion. It’s being mentioned in my ethics class this week, and we had an excerpt to read. There’s some fascinating research, and I’ve found his TED talks interesting.

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Review – The White Queen

Posted 12 February, 2014 by Nikki in Reviews / 0 Comments

Cover of The White Queen, by Philippa GregoryThe White Queen, Philippa Gregory

I didn’t get on with The Other Boleyn Girl, but I was willing to give Philippa Gregory another chance because she is such a loved writer, and it is an interesting part of history — and perhaps more importantly, the portrayal of medieval queens is something I’m really interested in academically. But gah, I’m afraid I’m really wishing I hadn’t bothered, or at least that I hadn’t bothered to buy it. €12!

The problem with it is apparent from the very first pages. Elizabeth moves from a crafty, strong woman who despises the king but does what she needs to out of necessity to a giddy girl who doesn’t even seek proper proof of what’s happening within a handful of pages. By page fifty, she’s desperately in love with him, she’s married to him, she has faith that he’ll come back to her — all based on very little character development, for us, and with no time spent getting to know him (unless, I’m going to be crude, knowing his dick very very well counts) for her.

I actually liked the references to Melusina, etc, because that was something that could well inform someone’s attitude back then. But that was about the only thing I liked. Here is this woman who was strong, capable, and at the very least politically astute if not downright clever — reduced to a melting, credulous little dove over a handsome face. Gregory’s version doesn’t feel consistent, either internally or with history. Other characters are just as mercurial, so it’s not as if this is a clever characterisation thing.

If I ever get to writing a thesis, I’ll probably have to reread this and read a lot of Gregory’s other work, but it’ll be unwillingly.

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Review – Fanny and Stella

Posted 11 February, 2014 by Nikki in Reviews / 0 Comments

Cover of Fanny & Stella by Neil McKennaFanny and Stella: The Young Men Who Shocked Victorian England, Neil McKenna

Despite the claims of meticulous research, Fanny & Stella seems to be mostly a sensational recounting of some admittedly quite sensational events. On the one hand, I felt that there was a lot of delight taken in talking about the “sordid” details — pretty thorough accounts of physical examinations for sodomy, and also a bit of an obsession with the sex as well. It’s also written in many places as if it’s nothing but a story, and it certainly doesn’t keep in mind that for Stella and Fanny, this trial was potentially a death sentence.

On the other hand, from the descriptions here (admittedly this could be the author’s work rather than reality), the two would have loved the attention, the tell-all details, outside the context of, you know, being in great danger. And I certainly learnt about the LGBT community in the Victorian period, and some of it rather surprised me.

The fact that Fanny and Stella were referred to by those names, more or less consistently, and by female pronouns… I couldn’t decide if that was meant to be respectful to them (what were their gender identities? Would they even have had a concept of that as we do?) or if it was meant to drive home at every point the whole “He-She Women” thing going on. Adding to that was the way the author presumed to know what was going on in their minds…

All in all, it’s entertaining but I wouldn’t trust it as solid scholarship, and I’m a bit leery of the author’s motives in writing it. Certainly it felt like there was a lot of prurient interest going on.

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Review – The Phoenix and the Mirror

Posted 10 February, 2014 by Nikki in Reviews / 0 Comments

Cover of The Phoenix and the Mirror by Avram DavidsonThe Phoenix and The Mirror, Avram Davidson

I’m really not sure what to think of this. It reminds me of John M. Ford’s The Dragon Waiting, somehow; something about the style, the density of it and allusiveness. I’m sure I missed some things by not being aware of the Vergil stories, not picking up on all the mythological references properly — and I have a pretty good background in that sort of thing, since I took Classics.

It’s a slightly different style than expected, too, I think. It slides seamlessly between scenes without any transition, it slips from direct speech into reported speech — it doesn’t make things easy. I quite liked the writing style, for the most part, but I wouldn’t like it to be a common one, if that makes any sense.

The story itself… it’s a quest narrative, but the quest is more about knowledge than action, at its heart. It’s about making a magical object, in a context where magic isn’t easy, isn’t a shortcut as it can be in other fantasy works. It’s a long slow process, like any other way to make something, and it requires sacrifices and effort. It’s an interesting take on it.

I wasn’t overwhelmingly fond of the portrayal of women — Cornelia, Phyllis and Laura seemed pretty nebulous, and the love aspect was just flung in there — but The Phoenix and the Mirror was something a little different to my usual fare. It just wasn’t as good as I’d hoped.

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Review – News From Gardenia

Posted 10 February, 2014 by Nikki in Reviews / 0 Comments

Cover of News from Gardenia by Robert LlewellynNews from Gardenia, Robert Llewellyn

The idea of creating a proper utopia, as opposed to portraying an idea that was meant to lead to a utopia and ended up being oppressive/only working for the upper class citizens, is not a new one, but it’s not one I’ve seen around much recently. Part of that is probably that it’s hard to make a society like that interesting; my English teacher Mr. E always used to point out that literature is about things going wrong, that what we are interested in is not happy people, but the conflicts they come into. I would add that we enjoy a happy ending, true, but it needs to be earned, whether by an epic battle or a comic series of misunderstandings and angst.

The problem with News from Gardenia, for me, is partly that. It’s a utopian society, and nothing seems to happen through the entire novel apart from the narrator being transported forward in time — where very conveniently, people immediately recognise what’s happened and sort out said hapless narrator.

The other problem is, well, I didn’t like the POV character. I’m not sure if he’s intended to be on the autism spectrum, as another reviewer suggested, or whether he’s just meant to be the stereotypical insensitive nerd guy, but his attitude to his girlfriend from page one was making me grind my teeth, and it didn’t get better. The writing isn’t good enough to carry that, making me wonder if it’s actually a character voice or the author. Blech.

So in summary, not worth it, sadly. But hey, if anyone wants it, I’m putting it on Bookmooch.

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Review – The Real Jane Austen: A Life in Small Things

Posted 10 February, 2014 by Nikki in Reviews / 2 Comments

Cover of The Real Jane Austen by Paula ByrneThe Real Jane Austen: A Life in Small Things, Paula Byrne

I have never really been a big Austen fan, which along with my relative indifference to Shakespeare and Chaucer when I began my first degree reaaaally made other lit students look at me askance. I still think that those three are pushed upon us to a ridiculous degree, and often its not even their best work that is touted as The Book To Read (for example, I favour Troilus and Criseyde over The Canterbury Tales, and pretty much anything over Romeo and Juliet). But anyway, I’ve slowly come to appreciate them a little bit more, which will probably horrify my mother (at least where Austen is concerned). Sorry, Mum.

Paula Byrne’s biography of Jane Austen is quite a common sense one. Instead of looking first to her fiction and then trying to extrapolate out to her life, it looks at the objects that surrounded her or inspired her and teases out things from there. I’m not really a scholar of the period in any sense, so I can’t speak as to the accuracy of it, but it reads well and I appreciated this view of Jane Austen as a practical, witty and determined woman, fully supported by her family and with no doubts about her chosen course in life. It debunks ideas like the picture some people have of her being very sheltered and not in contact with the world, putting us in touch with the politics she would have been aware of and the places she went. It has some nice inserts with some of the objects mentioned pictured in colour.

I’m not keeping this book, but I’m certainly donating it to my library — I know that someone who is more of an Austen fan than me will doubtless appreciate it even more, and I’m willing to bet there’s a member of even our tiny little library who fits the bill.

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Review – The British: A Genetic Journey

Posted 8 February, 2014 by Nikki in Reviews / 0 Comments

Cover of The British: A Genetic Journey by Alistair MoffatThe British: A Genetic Journey, by Alistair Moffat

I generally enjoy Alistair Moffat’s non-fiction writing (I don’t know if he’s written any fiction), although I don’t agree with his outlook on the Arthurian legends (which he even manages to slot in here). It’s very much popular science, or that’s how it feels with the inserted text boxes of “interesting facts”, but the level isn’t really “complete beginner”. I mean, it talks about mapping population movements via comparing particular unique markers, which must mean single nucleotide polymorphisms (SNPs), but it doesn’t really contextualise that much. To me, my classes in genetics and anthropology contemplated this really well. It also talks about mitochondrial DNA and things like that, again without much explanation.

It starts off being general, rather than really a genetic history of the British, because of course, it goes back to the last common ancestors of mankind. It narrows down later on, looking at the various different inflows of new DNA, e.g. to what extent the Romans or the Normans mixed with the people already in Britain. What I was more interested in was the discussion of how Britain’s population got there. I didn’t know, for example, about the land that joined Britain to mainland Europe at one time, Doggerland, so all of that was new to me.

All in all, it didn’t give me many surprises, but it’s pretty up to date (includes stuff about recentish finds like the Denisovans) and, for the British population, pretty comprehensive. I’d have liked a little more about the separate populations of Britain: there are genetic differences, generally, between Scottish, Irish, Welsh and English people, and I’d have been interested to know more about how those groups formed and remained intact.

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Stacking the Shelves

Posted 8 February, 2014 by Nikki in General / 38 Comments

Yay, it’s Sunday Saturday (I can do the days of the week!) and I have some books to show off! Tynga’s Reviews, as usual, is hosting Stacking the Shelves.

So first things first, a new library opened in Caerphilly. It is lovely, and only getting four books out was a heroic feat.

Cover of Dreadnought by Cherie Priest Cover of Greatshadow by James Maxey Cover of The Iron Wyrm Affair by Lilith Saintcrow Cover of Dream London by Tony Ballantyne

And then yesterday after my shift as an RNIB volunteer, I ended up in the hospital’s WHSmith, which was dangerous. They always have buy one, get one half price, but I couldn’t find a fourth I was interested in. Which is probably all to the good.

Cover of Anatomies by Hugh Aldersley-Williams Cover of Longbourn by Jo Baker Cover of Fanny & Stella by Neil McKenna

I’m most excited about Fanny & Stella, which I’ve already started reading. It’s a bit sensationalised, but I think the subjects would’ve loved that. Not the trial for “conspiracy to commit buggery”, but the very exuberant, flamboyant biography.

And finally, here are two pictures of my makeshift bookshelf, containing almost all the books I dragged with me for a five-week trip to my parents’ (minus the comics, which’re on a different shelf).

Photo of my makeshift bookshelves, crammed with books Another view of my bookshelves, showing off my owl bookends

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Review – The Book of Barely Imagined Beings

Posted 6 February, 2014 by Nikki in Reviews / 0 Comments

Cover of The Book of Barely Imagined Beings by Caspar HendersonThe Book of Barely Imagined Beings, Caspar Henderson

Caspar Henderson’s 21st Century Bestiary is not an encyclopaedia, as some people might expect, but something more in the medieval tradition of bestiaries, mixing information with philosophical and moral comment. It’s interesting, and Henderson’s ideas are well expressed, and I imagine a full colour version of the book must be stunning (my own is the paperback, all in black and white, but I seem to recall seeing a colour edition). It’s definitely not all that scientific, in places, relying on anecdote and going off on tangents into what an organism might have to teach us.

One of Henderson’s major concerns is the environment, and the preservation of Earth’s current biodiversity, for which he makes a good case. Ultimately, if your interest is science, this will probably be unsatisfying: it’s here to demonstrate some of the scope of biodiversity, not to explain it, or even to go very deeply into any one scientific principle (though it touches on plenty).

I do wish it had been better edited — the typos and such are extremely distracting. All in all, it isn’t quite as good as I’d expected from the rave reviews and my quick glance over it in the shop, but it is interesting.

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