dyslexia

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.

 

dragon symbols

Beyond the proofs

Somehow, we’ve ended up here, in October and my work on The Bone Dragon is nearly done.

The second proofs are being prepared. The big new thing is the addition of a special scene-divider symbol in place of the basic *. My wonderful project editor, Lucie, said she’d come up with several to discuss and I asked if – pretty, pretty, please – a dragon could be one of the options. The Wonderful Lucie sent me these.

dragon symbols

dragon symbol

I can’t wait to see the new proofs with all the dragons in them!

At this stage, it should just be a matter of checking through to be absolutely sure that no weird computer glitches have introduced errors since the last proof… and to double-check-squared that there aren’t any little mistakes. No other corrections are permitted. Which is a relief. I am ready to move on. I’ve done all I want creatively with The Bone Dragon. It’s time for a new project.

… Actually, it’s proven time for several. I’m re-writing several ‘old’ manuscripts and I’ve also started something completely fresh. But more about that in a separate post.

For now, I need to sit tight until the second proofs arrive and then check them as quickly as possible because after that… copies for early review will be printed. I was equal parts excited and terrified about this but all of a sudden I can’t wait for people to read my wicked little book. Whatever anyone else thinks or says, I’m happy with it. It’s even better than the book in my head – the first time I’ve ever felt that with a manuscript. It’s exactly what I wanted to write.

And of course I want people to love it, but I’ll be OK if they don’t so long as they’re not nasty about it. If someone points out legitimate flaws, then I’ll learn from that. If they just don’t like something, then fair enough. But if someone doesn’t judge the book on its own terms, I’ll find that really hard – mostly because reviews aren’t a conversation. They’re rhetorical statements: authors aren’t expected to reply.

So what do I mean by ‘judge the book on its own terms’… It’s easier to explain with reference to non-fiction. When you submit an article to a peer-reviewed journal, all identifying info is removed from the article and then it’s sent out to three or more specialists in the area to see what they think. They write a review to say whether the journal should publish the article. As a journal editor, I know all too well how often reviewers disagree – and disagree dramatically. But the thing I found hardest as an author wasn’t rejections based on flaws in my work, but the one review where the ‘specialist’ basically said ‘You like orange and I think green is better’. I was writing about dyslexia. It’s a tricky field as no one agrees on what dyslexia is. I was using one of the ‘industry standard’ definitions… But it wasn’t the one the reviewer preferred. The reviewer believed that dyslexia is a reading disability – I don’t agree. I believe dyslexia results in reading disabilities, but I see those as a consequence of more basic, cognitive processing differences.  Uta Frith has done some fantastic work about rhythm, sequencing and insensitivity to the frequency of vowel sounds as the root of phonological deficits.

Anyway, my research supported my views about what dyslexia is. Unfortunately, the reviewer wasn’t interested in the substance of my work. Instead of pulling apart my methods, results and conclusions to show how I was wrong and he was right, he used the review to criticise my approach to studying dyslexia – even though my approach was more inline with the bulk of the literature than his. I am still furious about the review because I didn’t feel like the reviewer judged the article on its own merits.

And that’s the one thing I’m really worried about review-wise with The Bone Dragon. But there’s one big difference between that experience and this. The article was rejected on the balance of that review. All the other reviews had suggested the article be accepted with corrections or revised and resubmitted (for further review). All the other reviewers made legitimate criticisms about the article, which I then corrected when I submitted elsewhere. Unfortunately, by the time that happened the research was in danger of getting out of date so I chose to submit it (now in the form of two linked articles) to my university’s online journal (read article 1 here and article 2 here). A lot of participants had given up their time to the research: I had to get the findings published, even if it wasn’t in my ideal choice of journal. The big plus side was that my work supported the launch of a new open access journal. I’m a big believer in open access publishing for academic work, though I do concede that finding sufficient funding is a real challenge: the EHRR, the journal I edited, was also open access, so it was nice to support that movement as an author.

The point here is that, even if I do get what I feel is an unfair review, I’ll be able to hold on to the fact that it’s a review of a published book. My published book.

And maybe they’ll be good. I love my wicked little book… And I now have an agent and publisher who love it too, so maybe – just maybe – other people will love it too.

But I guess we’ll just have to wait and see. Fingers crossed! Wish me luck.

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?