Re-reading As a More Critical Reader | Disability Diaries

Today, I’m not talking about a specific disability, as I did in my previous two posts. Instead, I am talking about re-reading.

There are quite a few books I’ve read in previous years, that include disability in some form. Whether the main character has a disability, or a side character does, that does not matter. You may also know that I usually rate on enjoyment: how much did I enjoy the book? In the past few months/year though, I’ve tried to become more critical of diversity and representation. So I’ve decided I want to re-read these books, and be more critical of the disability representation in them. Will I still enjoy them? Which problems did I overlook or did I not even realize existed, as an able-bodied reader?

Me Before You: I loved this book when I first read it. But Ely pointed out this is actually a very problematic book in terms of how it deals with disability. So I want to re-read it, and be more critical. I want to realize the problems, and see them.

The Fault in Our Stars: I have a feeling I won’t like this one upon a re-read. But I want to re-read it and really look at how the characters, and the author obviously, deal with cancer and terminal illness.

All the Light We Cannot See: One of the main characters in this book is a girl who is blind. I quite enjoyed this one the first time I read it, but I’m curious to see what a re-read would do.

The Year We Fell Down: I really enjoyed this NA romance about two characters with a disability. The female main character had an accident during a hockey training or match and now needs a weelchair to get around. I think she had a spine injury, but I’ve forgotten the specifics. And I believe the male main character broke his leg? I wonder what I’ll think of this book when I re-read it.

Maybe Someday: the main character, Ridge, is a deaf musician. I read this in 2014, so I think it’s time for a critical re-read.

Cinder & Ella: I only read this a few months ago, I know. And I loved it. So I’m hoping the re-read won’t change my mind?

The Summer of Chasing Mermaids: The main character in this book can’t speak anymore, and she used to be a singer. Now, this is kind of a retelling of the Little Mermaid, but I still want to read it with my eye on her inability to talk.

Half a King: this is a fantasy book about a main character who was born with only one hand, and is therefore considered to only be “half a king” as he can’t pick up a sword and fight.

Lastly, there are some books I read during my childhood by the Belgian author Dirk Bracke. He writes young adult books, and always about tough topics: teenage pregnancy, coming out, sexual abuse, childsoldiers, being a girl in a gang, teenage prostitution, etc. I learned so much from his books growing up, and I want to re-read a few:

Het Uur Nul: this was my first Dirk Bracke -and it literally translates to The Hour Zero. This is about a teenage guy, Ben, who discovers he is HIV+. This book was written in 1996, and I read it absolute YEARS ago (probably more than a decade) so I want to see what I’ll think of it now.

Stille Lippen: which literally translates to Silent Lips. This is about a girl, Elien, who is hard of hearing. She just wants to be a normal teenager and go to clubs and have fun with her friends, without overprotective parents. This is one of the few books by him I can’t actually remember much of, so I desperately want to read it again.

Een Lege Brug: which translates to An Empty Bridge. This is about a teenage guy called Siem, who finds a girl sitting on a bridge, drawing. She’s drawing and counting every line on her piece of paper. She has autism, and it’s about Siem falling in love with her.


So those are some books I want to re-read,and be more critical of this time! Will I still enjoy them? Will I notice some problematic aspects I never realized before? I guess I’ll find out.

Don’t forget to check out all the other posts by the other hosts, Ely @ Tea and Titles, Cee Arr @ Diary of a Reading Addict, Dina @ Dinasoaur, Angel @ Angel Reads, and Lara @ Another Teen Reader.

 

Dementia in Literature | Disability Diaries

I wasn’t quite sure how to write this post, when I first got the idea. I want it to be informative and concrete, but at the same time respecting the privacy of my family. Like I’ve mentioned before, I personally do not have a disability (so I’m an able-bodied person, if you’re not familiar with the term). Yet there are quite some types of disability I’ve come in contact with growing up: cancer, diabetes, etc.

One of those disabilities is dementia. I don’t want to go into detail here, because I feel like it’s not my place to do so. I want to respect my family’s privacy. To understand why I’m writing this though, I will tell you that someone in my family suffers from dementia.

Before this happened, and the symptoms started rearing their heads, I didn’t really know much about dementia. I’m assuming a lot of you don’t either. We recognize terms such as dementia and Alzheimer’s disease, but do we truly know what they are? They’re not the same at all.

Dementia is an umbrella term for a decline in mental ability severe enough to interfere with daily life. It’s a syndrome (a wide range of symptoms), not a disease, and there are many forms of dementia out there.

The two most common types of dementia are

  1. Alzheimer’s disease, which causes problems with memory, thinking and behavior. It worsens over time, and there is no cure -at least, not yet.
  2. Vascular dementia, which occurs after a stroke.

Most forms of dementia are progressive. The symptoms start out small, such as forgetting where you placed certain items or having difficulty learning new information, and get gradually worse.

There is this tendency in the world to just lob everything under the term of dementia or aging. Dementia symptoms are often seen as just a normal side effect of ageing. They’re not. Losing memories, changing behavior radically and the way you think are not part of ageing. On the other side of the coin, many other disabilities or syndromes get lobbed in the dementia category. For example, in my family someone has Parkinson’s. That’s not the same whatsoever. Other mental illnesses also get shoved under the dementia term, such as bipolar disorder. Misdiagnosing these disabilities and syndromes will neither help the patient nor those caring for them.


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Today, I’m talking about my experience with dementia, and that includes vascular dementia. There are really two sides to living with dementia: the side of the person who suffers from dementia, and the people close to said person.

I can’t speak from experience about being a person with dementia. I can only imagine it to be a terrifying thing, to slowly see your memories slip away. I can however, speak from experience about being close to someone who suffers from dementia.

It is an incredibly difficult thing. Dementia can not only affect your memories, but the person you are. It can start so small, with a person saying something completely out of character or context. And it can progress so quickly, that in a year that person will hardly recognize who you are.

It is so difficult to see a person you love so much, lose themselves so completely. When they forget the experiences and memories that made up so much of their lives, their personality changes too. Because you are formed by your experiences. Some return to childish behavior, like breaking stuff on purpose. Some get slurred speech, which makes it almost impossible to understand them.

After a while, it’s very possible that the person you love so much won’t remember you. That they will look at you and be confused, because who is that person visiting me? It hurts to see total confusion in the eyes of someone you love, and not see a spark of recognition.

So I hold on to my childhood memories of said person. I hold on to the Wednesday afternoons she watched over me and my brother while my parents were at work. I hold on to the “stoemp met spekjes” she made for us -which is basically mashed potatoes with spinach and bacon mashed in. I hold on to the countless of cartoons I watched while sitting on a cushion on the floor. To the spaghetti she made, which was always quite salty. To the strong woman who raised three children on her own, and kept a small farm (kind of) in a time where none of that was as “easy” as it is now. That is the woman I remember.

disability diaries dementia in lit.png

In the past few years, I’ve thought a lot about dementia. And I want to share some of that with you.

I think it’s incredibly important to portray dementia in literature. Reading about the experiences is not only useful for those working with patients with dementia, or family members. It’s important for everyone. It can mean noticing the signs early on, which gives the doctors a better chance of fighting it. It can mean knowing what to do once you do start showing symptoms, and how to talk to your family about it. It can show you ways to deal with dementia, or how you’re basically grieving for a person who is still there, but isn’t.

this is where it ends

I can only think of one book I’ve read that features a person with dementia, and that is This Is Where It Ends by Marieke Nijkamp. It’s not one of the main characters though, but the mom of one of the students in the book. She’s slowly forgetting so much, and Sylv is doing all she can to care for her.

For a syndrome that is SO prevalent in our world at the moment, it is sorely underrepresented. Especially in YA and kidlit. So I’m going to try and read more about it. Read more fiction with dementia in it. Here are three books, I want to read in 2017.

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The Memory Wall: Severkin is an elf who slinks through the shadows of Wellhall’s spiraling stone towers, plundering ancient ruins and slaying mystical monstrosities with ease. He’s also a character in a video game—a character that twelve-year-old Nick Reeves plays when he needs a break from the real world. And lately, Nick has really needed a break. His mother had an “incident” at school last year, and her health has taken a turn for the worse.

The Memory Wall is a MG/YA book, and I believe it talks about dementia -or Alzheimer’s specifically, I don’t know. It’s so far the only one I could find.

Still Alice: Still Alice is a moving and vivid depiction of life with early-onset Alzheimer’s disease.

Still Alice has also been turned into a movie, so I want to watch that one too. This isn’t a kidlit book, but an adult fiction one.

Hersenschimmen: This is a Dutch book that follows Maarten, who is quickly losing his grip on his memories and reality. This is a book about dementia and love, as I believe it also has a focus on his wife -who he sometimes doesn’t recognize.

Have you read any books about dementia? I would really like some recommendations from you all, whether it’s kidlit or adult.


Don’t forget to check out all the other posts by the other hosts, Ely @ Tea and Titles, Cee Arr @ Diary of a Reading Addict, Dina @ Dinasoaur, Angel @ Angel Reads, and Lara @ Another Teen Reader.

Sources I used:

http://www.alz.org/what-is-dementia.asp

http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp

Dyslexia in YA | Disability Diaries

When Ely asked me to participate in Disability Diaries, I couldn’t be more excited or grateful. You may all be thinking: “Jolien, I didn’t know you had a disability?”. I don’t. At first I thought this would make my participation less valid, because I can’t speak from experience, nor am I an #ownvoices person in his topic. Then I thought about how many able-bodied people out there, including me, have no idea how to address disability or what it means to be disabled (in any way there is). So I think it’s important for able-bodied people to go out and look for books on disability. That way we can learn, become more educated and hopefully never say something (accidentally) rude again.

*warning: there may be a slight Six of Crows spoiler ahead, as I’m talking about Crooked Kingdom*

As you may have guessed from the title, I’m talking about dyslexia today. If you aren’t aware, dyslexia is a learning disability characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. Next to dyslexia, there are also some other “similar” disabilities, such as dyspraxia (which affects fine and/or gross motor coordination in children and adults) and dyscalculia (which is a learning ability that makes it very hard to make sense of numbers and math concepts, it makes them difficult to grasp, understand and apply).

When I took a look at my shelves, I could only find 2 books I had ever read that featured a character with dyslexia. So I’m talking about them today.

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crooked-kingdom

For those of you who have read Six of Crows, you know that Wylan is dyslexic. Wylan is an amazing chemist, creating his own fireworks (kind of), bombs and artillery. He’s also the son of a nobleman. During Six of Crows, you find out that Jan Van Eck, Wylan’s father, has been sending him letters often which makes you think that he cares for his son. In fact, his father knows that Wylan can’t read. He sends the letters as a cruel reminder of the fact.

Here’s a quote from Crooked Kingdom, talking about Wylan’s dyslexia:

Jan Van Eck was three kinds of fool for the way he’d treated his son, but Jesper could admit he was curious about Wylan’s supposed “affliction”. He wanted to know what Wylan saw when he tried to read, why he seemed fine with equations or prices on a menu, but not sentences or signs.

I was pleasantly surprised at how Leigh Bardugo wrote about Wylan and his dyslexia. He wasn’t just his disability. He was an amazingly interesting character first: a wonder with explosions and chemistry, a shy guy who blushes when Jesper flirts with him, an incredible friend to Kaz and his crew. And he has dyslexia. I think it’s important to talk about disability, of course, but also to not reduce the character to only their disability.

I found it interesting to see how Wylan had built a life to avoid exposing his dyslexia. He memorized books when people read them to him –I’ve also just discovered that memorizing is an encouraged way of learning in an alternative manner for people with dyslexia. He sought hobbies and passions that didn’t require him to read, only to work with numbers.

To me, that is both interesting -and a tad worrying. It’s interesting and good because it allows him to develop other skills. It shows that he is an intelligent person, as dyslexia has no correlation to intelligence whatsoever. But it’s also worrying because dyslexia is not a disability that is curable, or will go away. Is it good to truly avoid reading? People with dyslexia can learn to read! They may use different reading tactics than our “normal” education offers, but with help and patience, they can learn to read.

Overall, I found the representation of dyslexia in Crooked Kingdom very interesting, and it gave me a lot to think about. Such as how to best help children with dyslexia now? How to nurture their possible love of books in a different way? What must it have been like for those with dyslexia throughout history?

*Note: I am not dyslexic. I have done my best to analyze the representation in this book objectively, but obviously I could have gotten a lot of it wrong. If you are dyslexic, I would really appreciate it if you could enlighten me about the representation in this book. If you have found a review or talk about this book from an #ownvoices point of view, let me know!*


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percy jackson 1

The only other book on my bookshelf, and my initial Goodreads search, that includes a character with dyslexia is the Percy Jackson series by Rick Riordan. I’ll talk about how horrifying that is later. First, let’s talk about Percy Jackson.

I think there are both positive and negative aspects of the representation of dyslexia in this book/series.

What are the positives?

First of all, this series is incredibly popular not just with young adults, but children as well. This means that more people will read about Percy who is dyslexic -and thus the learning disability becomes more widely known. Hopefully, some kids will recognize the descriptions Percy gives of his reading experiences and know they are dyslexic. On a lot of websites about dyslexia, I’ve read that lots of kids believe they are stupid or that their brain is defect because they don’t know about learning disabilities or dyslexia. So this could help kids realize that they are neither defects nor stupid in any way.

The second positive aspect is one that I only really realized when reading these as an adult. It makes me realize how severely our education systems are lacking in dealing with learning disabilities. In this story, we are told that Percy goes from school to school and that most teachers think he’s a bad student. There has only been one teacher who believed in him:

But Mr. Brunner expected me to be as good as everybody else, despite the fact that I have dyslexia and attention deficit disorder and I have never made above a C- in my life.

The fact that students with a learning disability have so little support in education systems around the word makes me incredibly sad -especially because a fair amount of the population actually suffers from them. As an adult, this makes me realize I need to educate myself on how to best support children (and adults obviously) with a learning disability, instead of making them sit through the same curriculum and methods as everyone else and watch them withdraw or feel awful about it.

But there is also a negative aspect to the dyslexia representation in this book, I think. In this series, it’s all about being a half-blood. For most half-bloods this means dyslexia, a common disability they all share. However, it’s being explained as their brains being hardwired for Ancient Greek, not English. I feel like in many ways, this is a cop-out. In Greek, they’d have almost no problems reading anymore? I know it’s a way of adding more to the half-blood persona, but it would have been even better, in my opinion, if these kick-ass half-bloods had just sought out ways to help each other with their learning disability instead of explaining it away.


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So what have I learned, when looking for dyslexia in my books -and reading about it?

I have learned that this learning disability, which apparently up to 15-20% of the population shares in some degree, is sorely underrepresented in literature. I could only find two books I’d read that feature it, and one book that has gone onto my TBR immediately: Fish in a Tree by Lynda Mullaly Hunt.

I have realized how little I knew about helping those with dyslexia. Now I know that there are several other ways to help them: for example, audio-books. This could be very useful both in fiction and with textbooks. Or use apps with voice recognition software to let your child dictate their ideas.

I have realized that I want to actively help more -and maybe see whether my local library has a program to help dyslexic children to read more.

I have realized that our current educational system sorely lacks the knowledge and resources to help children with learning disabilities. We could do so much for this children through listening, memorizing, letting them sit closer to the teacher to filter background noise out more easily, reading to them and encouraging them. But we don’t. Instead, we have one “normal” educational system for young children. At least in Belgium, children all have the same elementary school education (except for children who have been diagnosed with autism, Down syndrome, and a few other disabilities). But children who have dyslexia can only truly realize this when they start their journey of reading, which happens in elementary school. Then, they are already stuck in this educational track that is the same for everyone. And not being able to read as fast, or grasp the numbers on your piece of paper, quickly gets these children the label of “stupid” or “lazy”. We need to make teachers aware of the symptoms of these learning disabilities, and give them tips on how to help these kids.

I have realized that the problem with dyslexia starts with the diagnosis. Not only do we not make enough of an effort to help children and adults who have been diagnosed with dyslexia/dyscalculia/dyspraxia, we also don’t make the diagnosis accessible enough. In some (I don’t know whether this applies in every country, obviously) it is too expensive to get a formal diagnosis on these disabilities. It can even be hard to find a psychologist who provides the diagnosis. If we don’t even make an effort to diagnose these children/adults, how will we ever be able to help them?

In my effort to understand dyslexia more, I tried this “Through Your Child’s Eyes” simulator. It allows you to kind of see what it’s like for your child if they have a learning disability. I took the experience of a child having trouble reading, and it’s honestly the hardest thing I have ever done.

That’s what I learned this week. By opening my eyes and LOOKING for representation, I have found myself disappointed in our education system, and willing to actively help and understand more.

If you are a person with dyslexia, I would love to hear your thoughts on representation. Or if you know someone with dyslexia. Would you have any books to recommend? Any representation issues I may have missed? Any tips on helping those with dyslexia? Talk to me, people.

Don’t forget to check out all the other posts by the other hosts, Ely @ Tea and Titles, Cee Arr @ Diary of a Reading Addict, Dina @ Dinasoaur, Angel @ Angel Reads, and Lara @ Another Teen Reader.


Here are some of the resources I used:

www.dyslexiaida.org

www.understood.org/en/learning-attention-issues/child-learning-disabilities/dyslexia/understanding-dyslexia

Simulator Through Your Child’s Eyes: https://www.understood.org/en/tools/through-your-childs-eyes

Help Me Compile a Diverse Books List

So a while back, I wrote a discussion post on diversity, my privilege and how I felt uneducated on so many others’ experiences. In my quest to remedy my uneducation (what??) – so in my quest to educate myself- I have started a Google Spreadsheet on diverse books. I haven’t read all of them. In fact, I’ve barely read any of the list so far.

I included all kinds of diverse-reasons: maybe the author is POC, maybe it’s the main character who is diverse (POC, LGBTQIA+, gender related, …), etc. It doesn’t matter why the book is diverse. It just has to have one diverse aspect at the very least. 

While I have done my research, my knowledge is limited. So I’m asking you for help. I’ve made this into a Google Spreadsheet so anyone with the following link could edit. Help me create this diverse list -especially during these times.

Link: https://docs.google.com/spreadsheets/d/1sNVBBfWtkqKy-FVsU7Qf0lIh5u1eGC9T-b-S9St7xUA/edit?usp=sharing

Add the diverse books you’ve read. The ones you want to read. Add everything you can think of, so we’ll get an enormous list. So everyone can find themselves represented in a book. So others with a lot of privilege can read about your experiences. It doesn’t matter whether it’s middle grade, YA, NA or adult. The genre doesn’t matter. Just add it all.