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.


Hopeful endings, vulnerable readers & research

The wonderful Michelle of Fluttering Butterflies has just published a post asking various YA authors (including me) the following thorny question: Do YA writers have a responsibility to provide hope at the end of their stories? Particularly when it concerns potentially vulnerable readers such as LGBT teenagers or those with mental illness? Read the full post here.

My answer got rather long, even before I tackled the second part of the question, so I decided to make it the subject of a blogpost where I could ramble at length without my contribution becoming a monograph. So here are my thoughts on  the issue of hopeful endings and the responsibilities of YA writers to vulnerable readers.

I think Literature should be inclusive so I fundamentally don’t believe that vulnerable young adults should be given stories with a different valance to their endings. There are lots of ways in which a person might be vulnerable – or not – and this often shifts with circumstances. Sometimes it is important to focus on someone’s vulnerability in order to provide assistance, but this can all too easily become an excuse for excluding people. Often the purported reason for this is to ‘protect’ vulnerable people, but few people need or want blanket protection from all things in all areas of life: it’s a short journey from there to marginalising vulnerable people even more.

I see no harm in having some system to help people avoid books with topics or approaches they aren’t comfortable with: an online database of trigger warnings that people can consult if they want to seems a simple solution. What more is needed in terms of protection? Do we really want to exclude vulnerable young people from stories that run the normal gamut from happy endings through hopeful ones to the odd bleak one? How will that help?

Surely vulnerable young people are hyper-aware of how often the world is grim and, at best, hopeful and sometimes not even that. Why would we even consider denying them a fictional representation of what may well be their experience of everyday life? Because they need an antidote? Perhaps, but if all they get is an antidote there’s a real danger that reading happy people getting happy endings will make them feel even more different, even further from supposedly normal people.

For me what is more important is to portray the truth of difficult circumstances.

Of course there is more than one ‘truth’ to every issue, but there are broad parameters within which the truth lies: that is the key to effective and responsible research regarding difficult things you’ve never experienced for yourself. Your character’s truth should fall within the parameters of what 99% of people in that difficult situation feel and think and experience. Because it’s a pretty wide field, getting it wrong is entirely avoidable and that means it’s also unacceptable.

Research failures should involve mistakes that aren’t easy to avoid: they should cover the tricky questions you don’t even know, from the outside, that you need to ask.

One of the things that is true for 99% of people in difficult situations is that one blow-up row, or one big revelation of trauma, does not fix things. It’s sometimes an important first step, but sometimes it’s a huge mistake. Either way, maybe it’s the start of things changing for good or bad, but it’s not going to be a simple, linear path from there to recovery. And the big thing is not going to go away. It may not control the person’s life in the future, but it won’t be gone. Nothing that big ever is. And that’s OK. That’s normal for 99% of people in the situation.

It’s so important that we tell people this: that we tell the vulnerable young adults who’re in the middle of a struggle and who think that success is 100% recovery or 100% happiness that it’s never going to happen, but that’s just fine. So long as life has happiness and things are better, it’s still a success. No one is 100% happy. No one is 100% OK with all of the things that have gone wrong in their life. In life, good enough really is more than good enough. We can reach for the stars, but if the message we’re getting is that anything less is no good, then we’re going to be pretty miserable spending our lives never achieving an unreachable goal.

Anorexics are never ex-anorexics even when they learn how to maintain a healthy weight, just as alcoholics are never ex-alcoholics even when they’ve been sober for forty years. It’s always there. But it’s not always there right at the front of everything. It’s not ruining your life and your relationships and your peace of mind all the time. Life’s happy and largely healthy and that is a huge achievement. It is more than enough. That is the goal, not the ‘perfect walk-off-into-the-sunset’ endings that too many books give us.

So if we’re going to have hope, it’s actually important that it’s not too hopeful: the hope needs to be realistic. It needs to be truthful. It needs to tell people that you don’t need all the hope in the world for your life to be good – you just need enough. All of this is just as important as trying to make sure that books are only bleak and nihilistic to a purpose.

Critically, this is true for all readers, vulnerable or not, young adult or adult. So I worry a lot less about whether my endings are happy/hopeful/bleak and more about whether they speak to a larger truth. Even in fiction, when we enjoy the ultra-happy ending, we tend feel uneasy. We know it’s not real. We know it’s not true. And the best fiction always make space for a truth beyond the story: a truth that speaks to what human beings are and what we can become. The truth is rarely out-and-out happy, but it’s also rarely without hope. Hope is the touchstone of the imagination: it’s where truth meets possibility, and surely that is what fiction is.


Happy UKYA Day: Why I love UKYA

Thanks to lovely Lucy Powrie for organising UKYA Day – and so many other UKYA things during the year. I absolutely love #UKYAchat: such a fantastic way to gather swathes of the community together to fill in the gaps between when we are in the same space! You’re a star, Lucy. I think we’re all blown away with how much you do. It’s incredible at any age: the fact that you have the known-how and dedication already is such a statement to what brilliant things lie ahead. Thank you for all you do for all of us. The support and positivity of the UKYA community is so important to so many people: a constant reminder that some corners of the world are full of enthusiasm, creativity and lovely people being lovely to each other.

It’s the UKYA community that inspired me to turn YA Shot from a little local event I was working on with Hillingdon Libraries into something much, *much* bigger. I knew there would be the support and enthusiasm to dream big because everyone would rally behind us and the fact that YA Shot will support all the libraries of the London Borough of Hillingdon. YA Shot is thriving because of your support: your interest, your RTs, your commitment to books and libraries… And the best is still to come. Join Lucy, George Lester, Holly Bourne, CJ Daugherty and me at 7pm on the #UKYADay live show for fun, bookish mayhem and the biggest YA Shot announcement yet. I hope you’ll agree that it captures what UKYA is all about. If you miss us, the news will be up on the website – www.yashot.co.uk – launching at the end of the #UKYAday celebrations (i.e. ~9pm 12 April 2015). Catch us on Twitter via the #YAShot hashtag.

As you’ve probably gathered, there are many reasons I love UKYA. A lot of them revolve around how wonderful the people are (which I wrote about in this post for the UKYABA), but an equal number centre on the books.

People disagree on whether YA is an age category or a genre. I’d put my flag firmly in the genre camp. One of the defining features of YA as a genre is that it can move across genre boundaries: it often sits on and in the ‘between’ spaces. It’s the perfect home for books that are lots of things at once. And I love that. I love that there’s a space on the bookshelf where Literary Contemporary can meet Fantasy and/or Magical Realism AND sit alongside Historical Fiction and Thrillers. Sometimes all in the same book.

Where UKYA has the edge is in the diversity not just of its subject matter but of the characters who people our pages. The UKYA community believes passionately that books and people are and should be diverse. We don’t always agree on exactly what that means or how to achieve a body of literature where diversity is as normal and natural as page numbers, but we all agree on the goal. UKYA authors and readers think and care about the issue: that is an incredibly important first step.

I also love that UKYA affords a particular edge in terms of moral implications. In general, UKYA is less dictatorial than, say, American YA (and I say that as a dual British-American citizen). UKYA often shows different people navigating different issues and situations in a ways that let the reader figure out whether they are doing it well or badly or somewhere in between.

There’s an argument that UKYA is more nuanced in general. Happiness and hope are generally not absolute in UKYA, just as they aren’t in the real world. That’s such an important message for people – tweens, teens or adults: that life can be good and happy and hopeful even when it could be more so. It doesn’t have to be picture perfect to be really pretty good.

In a lot of American YA (and MG) there’s a tendency to a ‘clear cut’ moral and an almost entirely happy ending for the main characters: there’s a lot more walking off into the sunset. I’ve never enjoyed that as a reader or as a writer. It’s not real and, for me, it doesn’t fulfil an emotional need because it’s so unreal. I like endings that are perhaps a little happier and a little more hopeful than real life tends to be, but I don’t want the Hollywood version. I want to see people happy with what someone in real life might get if a bad situation turned out really, really well.

I like complex, messy endings: endings that say that a life that is a qualified success, with a qualified level of happiness, is more than good enough. It doesn’t need to be rewritten to reach the 100% happy/successful mark that no one ever manages in reality to represent a satisfying ending. We don’t need the 100% version: it’s still a happy ending. UKYA excels at that message.

I also have a soft spot for the particular type of clever snarkiness mingled with outright silliness that only a Brit can deliver.

Three cheers for UKYA!