dyspraxia

Why the Disabled Students Allowance does need to change

The Government has just confirmed major cuts to the Disabled Students Allowance, making it the responsibility of universities to support many aspects of their disabled students’ study.

As a dyslexic/dyspraxic student who received much needed support for all three of my degrees, I can speak to how important DSA is in helping make higher education more accessible. But I can also speak to how egregiously and systematically it has been misused and exploited at huge cost to the tax payer.

In every degree, I had to go for an assessment of my needs – each costing over £300, not to mention the cost to me of travel when the assessment wasn’t on campus or where I wasn’t living near the uni. The real problem wasn’t the need to jump through expensive hoops but the fact that my reports always recommended things that I didn’t need or want – and which cost at least 50% more than what I did want and need. Each time I lobbied my Local Education Authority directly, showing that the equipment that would be most beneficial to me was available through a reputable retailer (not the ‘specialist company’ that the assessor had recommended) at significantly less cost. In each case, I substantially upped the specs of the computer I ended up with – meaning I had a better machine that lasted for longer because it was more powerful and could run the newer software available as time passed.

For instance, during my first degree my LEA agreed that having a big monitor would help me deal with databases and grids as I could use a large font and still see large chunks of data and write long calculations. I also nearly doubled my RAM and hard-drive capacity as well as getting a better processor. My needs-assessor was furious and complained that I needed to use the ‘recommended supplier’ who would come and set it all up for me and make sure I could use it all. But the LEA sided with me and gave me the machine I asked for. It was perfect and made a huge difference. I lasted me through my degree and into the start of my Masters, until I could access DSA again.

During my PhD, the assessor listened a bit more but also ‘sold’ me on the idea of a small hand-held scanner that I could use to scan text from books so I didn’t have to write notes (an excrutiatingly slow and inaccurate process for me as my spelling is atrocious and my handwriting is worse). What they didn’t say was that the scanner couldn’t deal with most type-faces, quailed at italics and needed to be wielded with coordination not possible for a dyspraxic to muster. It was an expensive waste of money and my time trying my best to make this ‘miracle solution’ do what had been promised – and it was a huge blow to my confidence when I realised that there wasn’t a magic fix to my note-writing problems after all.

And that’s apart from the fact that at every assessment the assessors pretty much insisted that I take MindMapping software because ‘they were positive it would be brilliant once I tried it’. I never did because I was so busy struggling – as most dyslexics do – to keep up with my reading and attempts to take notes. Since mindmapping has never done anything for me on paper, I couldn’t see why doing it on the computer would be better so why would I spend invaluable reading time on another ‘snake oil’ solution?

Yes, students need help identifying the software, hardware and other forms of assistance that could be useful for them. There’s a lot out there and it changes all the time: a chat with an expert is important. But surely it could be a chat with a well-informed member of student-support. In that, I agree about passing the responsibility to universities.

And I also agree that there should be a cap on what is available – especially for students who don’t have a physical disability. When there is a cap, you have to prioritise what is really likely to help enough to make the money worthwhile… And, in that context, students are often the best placed to know what is really going to work for them, at least after a chat with well-informed support staff.

But I also think that the reduced, capped amount available to disabled students should come from the Government and not universities because, if it comes from universities, then students will end up being denied access to diagnostic tests – expensive in their own right – that would give them access to DSA funds.

Universities screen to determine if someone is likely to be dyslexic and so whether it is worth sending them for formal diagnosis. Screening tests are – at VERY best – 90% accurate and it’s often a lot less. I know this as a fact because I was project leader of a Cambridge University research unit examining how effective screening tests are for people with high IQs – and the answer is ‘not effective at all’. Things have improved, but they’d have to given that the statistics behind these tests showed they were actually better at identifying which students were in further education and which were in higher education than which were at identifying which were dyslexic and which weren’t. And that was the market leader screening test. If universities have to pay out for support as well as diagnosis, then the bar will be raised on how ‘dyslexic’ you need come out as on these not-very-reliable screening tests before you’re sent for diagnosis and, thus, more people who need and have a right to support will be denied it.

So, yes, there has been massive misuse of public money, but there must be support for disabled students. And let’s not forget that they are NOT the people who’ve been gaming the system. It’s the people who’re meant to be helping them who are at fault. Let’s take it out on them by cutting their jobs – and, thus, their access to public money – and put more power in the hands of students to decide where a smaller, capped amount of money would best be spent. I expect students would benefit more, despite there being less money available to them. I know that I did when I got the lower-cost support I knew would help me the most and not all the rest of the rubbish that other people insisted would help me but, if anything, complicated my life by diverting time into ‘solutions’ that were never going to solve anything for me.

So yes to reform, caps and giving some more responsibility to universities, but no for making almost all costs the responsibility of universities. It won’t work and it will penalise disabled students. We need to give them a system that does the most in a cost-effective way. But if we can penalise those who’ve been misusing the system in the process, and only them, that bit gets a big thumbs up from me.

 

leaves against the sunlight

The Next Big Thing

The lovely Katy Darby has just tagged me for the Next Big Thing meme: a questionnaire designed to get writers talking about their next book. Ideally, each writer tags five others but I seem to have a knack for tagging people who’ve done it and those who don’t have blogs. Go me!

Anyway, here’re my answers. (BTW, I’m cross-posting on both blogs because I ended up talking a lot about The Bone Dragon.)

 

What is the working title of your next book?

MoB. While I’m still drafting I only ever refer to a book by the initials of the working title. Sharing the title sets it in stone for me so, as it’s hard to be sure a title’s right until the book is done, I try to keep it to myself until I’m fairly confident I won’t have to change it.

I’m the type of writer who doesn’t like to share a work in progress; for me, a big part of the joy of being a writer, and not a performer, is that I can keep my work secret until I’m ready to hear what other people think. If I start sharing stuff too soon, I get caught up in other people’s ideas and start doubting my own. I need to have a draft that’s close enough to the book in my head that I can use feedback effectively before I go about inviting it by sharing information. So, MoB it is for now. And, no, it’s not about men in dark suits or aliens. Or mobsters. Or flash mob dance crews. I defy you to guess the title… But would love to see your best shot.

 

Where did the idea for the book come from?

In The Bone Dragon, I feel that I started a conversation about a series of themes that are really important to me as a writer. MoB is the continuation of that conversation, without being a sequel. The plot developed from the idea for the ‘hook’, which led me to a key moment in the climax. From there, I used the idea of continuing the conversation from The Bone Dragon to help me work out the story of how and why the ‘hook’ leads to the climax – and vice versa, since the story isn’t as linear as it seems. The fun bit is that this is the opposite of how The Bone Dragon works: TBD is completely linear, only it’s not clear that that’s the case until you’ve reached the very end of the book.

 

What genre does your book fall under?

Like The Bone Dragon, MoB is a YA psychological thriller that will hopefully appeal to anyone over 16.

 

What actors would you choose to play the part of your characters in a movie rendition?

That’s a really tough question for me. One of the weirder bits of being as dyslexic and dyspraxic as I am is that I find it hard to remember and, therefore, to recognise faces. When I’m having a ‘dyslexic day’ (anyone who is dyslexic will tell you that a person’s level of ‘dyslexic-ness’ shifts from day to day – it’s one of the key things about dyslexia that research has yet to explain), I even struggle to recognise close friends and members of my own family. Mostly I recognise people by their context, their voice and, critically, their hair. This has a huge impact on my aesthetic. I rarely take photos of people and, when I do, I only take ‘snaps’. I just don’t have any sort of an eye for faces in their entirety. This is probably why I feel very strongly about letting readers ‘see’ what they want when it comes to my characters. I tend to provide a bare minimum (and often not even that) in relation to physical descriptions of people.

The flip side is that my visual aesthetic is overwhelmingly taken up with settings and objects. I always give a huge amount of detail on these things because I ‘see’ these things with crystal clear focus – almost as a way of making up for the fuzziness of the people. I love taking photos of landscapes and plants. My best photos are to do with angle, texture and detail, and that’s true in my writing as well. That, in a nutshell, is my visual aesthetic.

The bottom-line here is that I’m not sure I *can* answer this question. I’m also not sure I want to. If I did, I wouldn’t give photos, rather I’d talk about what various actors could bring to the parts in terms of evoking the key emotional aspects of the characters. For instance, the main character needs to be thin (it’s important to the plot): she also needs to look like someone who has attractive features but is almost trying to make herself unattractive, so the actor couldn’t be straight-forwardly pretty. She needs to come across as bordering on sullen, but with a degree of vulnerability that indicates that this is more than just ‘teenage sulks’. At the same time, she can’t seem fragile: she’s prickly on the outside and angrily defensive on the inside… Which makes her sound so lovable. But, like in The Bone Dragon, it doesn’t really matter whether readers like the protagonist per se. They just have to identify with the emotions that fuel her behaviour.

 

What is the one sentence synopsis of your book?

MoB is to a ghost story what The Bone Dragon is to a fantasy story about dragons. It starts with a girl in a blue coat vanishing into an autumn wood.

 

Will your book be self-published or represented by an agency?

Represented by my amazing, wonderful, fantastic, brilliant agent, Claire Wilson, at Rogers, Coleridge & White.

 

How long did it take you to write the first draft of the manuscript?

It’s not finished yet but I hope to have the draft done by the end of January. I know exactly what’s going to happen every step of the way, so it’s just about finding the right ideas at the sentence level. I hope it won’t be a long edit: it feels like it won’t be, but maybe that’s just wishful thinking. I’ve only been working on the idea since about March-April so it’ll be my shortest idea-to-book conversion ever. But I’ve got a good feeling about it, like I had with The Bone Dragon, so hopefully…

 

What other books would you compare this story to within your genre?

Oh gawd. I always find these questions so hard. It seems so presumptuous to compare to my work to the books I dream about seeing mine sit beside. Um… I guess the best answer looks back to what I said earlier: MoB is the continuation of a conversation I started with The Bone Dragon. If really pushed, I guess MoB is The Go-Between meets The Lovely Bones. Sort of.

 

Who or what inspired you to write this book?

When I first had the idea, I knew this was a book I wanted to write… but the inspiration that made it my most urgent project came from being signed by my wonderful agent, Claire. Out of all the books I wanted to write, this seemed the most natural progression from The Bone Dragon. I would love for Claire to enjoy the book and be excited to represent it. It’s the best way I can think of to say thank you for the first miraculous ‘yes’ that led to my finally being published…

… which, in turn, involved another critical ‘yes’. I absolutely love working with the team at Faber: it would be great to see if that relationship could continue and I think they might like MoB… but we’ll see.

 

What else about your book might pique the reader’s interest?

The protagonist is 16 going on 17, so the book explores some territory that’s touched on in The Bone Dragon but remains between the lines. The same aesthetic principles apply in terms of how the darker subject matter is tackled, but the conversation goes further. The protagonist is at a different point in her life with different things at stake so I have a very different array of opportunities to explore what damage means for someone who is on the verge of a whole series of life-defining choices – about A-levels, university, romantic relationships, where she lives, how she lives, who she’s going to be as an adult… In MoB, impending adulthood means that the main character doesn’t have much time to ‘get her act together’ if she is going to avoid mucking up her future.

Those are the things about MoB that are most exciting for me, as the writer. For the reader, there’s a much more obvious mystery to be solved in MoB that will hopefully sustain the book in a more fluid way than in The Bone Dragon. But the answers to that mystery will (hopefully) lead readers somewhere they’re not expecting at all.

 

So… three guesses what MoB stands for. Go on. Give it a shot. It’s cold and dreary and dark. Laughing will make it better. (So will chocolate, but that’s your own affair.)

Whilte tulip stamen and petals close up

100% Proofs

So, it’s September 18th (we’re only a few weeks behind ourselves now) and I am working on the proofs, also called page-proofs. Basically, this is the bit where the author is given a print out (almost everyone works in hardcopy at this stage) of the manuscript all formatted for the printing of the book. So there are page guides at the edges of the pages since the book printing won’t be in A4.

The proofs for TBD are gorgeous. Completely gorgeous. I spent quite a while stroking the first page (my preciousssss, oh my preciousssss…) and wondering at the fact that my words were on that page. All over it. And the next page. And the page after that. And yet this was clearly a real book in the making. It was very weird. But very wonderful too. I think all writers should be allowed a ‘My Precious!’ moment when their proofs arrive. But then it’s on with the work…

The author’s job is to go through and check for errors, be they grammar or punctuation errors or formatting errors. There are often some of those, especially if the original manuscript is in Word. When working on the EHRR, Word to PDF conversion would regularly format random paragraphs into a different font size or font style, create large gaps in the text and/or repeat lines.

Actually, there was almost none of that with my proofs so I was even more impressed by how Faber is able to wrestle Word into submission. The one spanner Word threw into the works involved turning some of my long dashes into superscript ~ signs. Go figure. But there is always SOMETHING like this with Word. It’s inescapable.

All of that is pretty easy. The one thing that’s difficult for a writer is that you must try not to edit for content. At all. The only exceptions should be when you realise something doesn’t make sense. This should be at the sentence or phrase level only. There were a few things like that in the TBD proofs. At one point, someone was standing upright but hunched over. Pretty clever of them, really. There were also a few instances where the pagination meant that the way I’d chosen to punctuate something didn’t work. Sentence fragments often read fine when they’re on the same line on the same page, but they don’t necessarily do the trick when you have to turn the page in between ‘bits’. I also made a handful of cuts – single sentences or phrases – that didn’t make sense and that were more easily deleted than corrected.

Anyway, the key here is that this is not the time to edit for content. If you find a better way of saying something that does actually make sense, then you’re too late. The only content things you should change are things that just don’t work. And they should only be little, occasional things. If you’ve got more than one every 20-25 pages on average, then you’re in trouble. Or at least that’s the rule I applied.

There are official ‘mark up’ symbols for making corrections, but publishers don’t expect you to use them. Just be clear and clean with your corrections. And keep them to a minimum. But do use a pen, rather than a pencil.

Anyway, I was a good little author and tried to make as few corrections as possible as the manuscript was in great shape.

But I did have one query item to discuss… One of the things I really like about the proofs is that they conform to a lot of key accessibility principles. The lines aren’t wide. There’s lots of white space on the page. The font is a good size. While the text is justified (ragged right margins are generally better for readability), it doesn’t stretch and concertina, so it’s a fairly accessibility-friendly justification.

While there are some sentences in italics, there isn’t a good alternative for this as bold just looks odd and changing the font isn’t accessibility friendly anyway… At the end of the day, there aren’t a lot of italics so it’s not a major issue… at least not compared with the key things about font size and white space.

There was just one thing that I found a little tricky as a dyslexic-dyspraxic reader: there are quite a lot of words that are hyphenated over the end of lines. I find it really hard to reassemble words than ‘run over’ from one line to another.

So my query was about whether we could reduce the number of these and/or whether we could change where the ‘breaks’ happened.

Obviously, the fewer of these the better, but why the point about ‘breaking at the root’? It’s much easier for ALL readers, not just ones with special needs, to reassemble a word broken at the root, like ‘desper- [new line] ation’ as opposed to ‘de- [new line] speration’. That said, it’s critical for many readers with special needs to have these linguistic cues. For instance, it took me about 5 minutes (even though I *wrote* the book) to figure out what was meant by ‘grey-or [new line] ange’. Similarly, I spent a good two minutes staring at ‘at- [new line] tention’ before I managed to figure it out.

For dyslexics and dyspraxics it’s hard enough to get the bits of words in the right order without having the full word to work with. For visually impaired readers, and those working with screenreaders and other accessibility technologies, it’s hard work to fit two word ‘bits’ together into a whole word when you can’t work on recognising the word as a whole. It’s not impossible, of course, but who wants time-consuming hard work to figure out what a word is when you’re trying to enjoy a story? It doesn’t make for the best reading experience.

As a former professional researcher in the field of dyslexia studies, not to mention both dyslexic and dyspraxic myself, I try to bring general accessibility good practice into my work whenever possible. For instance, when I was appointed Executive Editor of the EHRR, I re-designed the website, writing the code by hand as, while html generators are getting much better, they still have a nasty tendency to use tables, blank spaces and blank graphics to fudge layout issues: all of these are terrible from an accessibility perspective. (The Moodle virtual learning environment is a fantastic exception, BTW, and generally produces code that adheres to accessibility principles.) Anyway, the point with regard to the journal was that, as a human rights journal, we needed to have an accessible website.

That said, it’s hard to follow every good practice principle – at least to the letter – and come up with something that is both effective and beautiful. It’s OK to compromise on some things if you’ve taken the time to think through what is most important and then made a concerted effort to do the best you can.

So what about the proofs? The issue for me is that they’re beautiful. Really, really beautiful. I couldn’t be happier with how the book looks. And the page-setting is really great from an accessibility perspective… with this one small exception where I think the balance needs to shift just a little. So I’m hoping we can reduce the number of broken words without altering the look of the book and also make sure that the remaining broken words split at the root. I’m not sure what will be possible, which is why I’ve put forward a query rather than a series of corrections, but at the very least we’ll have given serious thought to making sure that the book is accessible and beautiful.

At the end of the day, it’s about priorities. Lots of white space and short lines are much more important than the odd sentence in italics. And the odd split word, if split at the root, won’t be an issue. We’ve just got to strike the best balance possible. And the first step is to be aware, so we’re already headed in the right direction.

Has anyone had any negative experiences of reading to do with layout or formatting? Has anyone with children with special needs come across things like broken words that make reading so much harder than it needs to be?