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I love music. I always have. I especially like punk and Indiepop from the 80s. My obsession with The Smiths and Morrissey led me into worlds of art and literature I would otherwise never have entered. Punk taught me about politics and animal and human rights. I can honestly say I’ve benefited from my love of music and my life is good because of it.

My messy Morrissey and Marr corner

If you don’t like music, you obviously have a worse life than me.

 

Or perhaps I’m being silly. If you happen to be indifferent to music, as many people are, how would you feel if I sincerely made statements like that?

 

Is it condescending of me to assume that I lead a better life than you because of my hobbies and interests?

 

How about I express pity at your music-empty life and tell you, with concern, that I hope you find a song that hooks you one day? Would you welcome my pity?

 

So why are statements like the one below accepted?

 

“If children develop a love of reading, they will have better lives.”

 

I recently had a small Twitter spat with a librarian who proudly quoted this as her ‘why’ (whatever that means). The source of this quote is a disgraced education pundit called Rafe Esquith.

 

I know many people who don’t read. I have two children who have not developed a love of reading. How dare anyone comment on the quality of their lives? In response to the quote, I wrote:

 

“My literate but non-literary daughter would beg to differ. She lives a rich and full life but does not enjoy reading.”

 

The librarian misunderstood my statement and continued to press the preposterous point by saying:

 

“Does she ‘read with her ears’ audiobooks? Does she enjoy being read to? Maybe she will fall in love with reading later.”

 

The fact is, she has a developmental language disorder, known as dyslexia. Reading is laborious, time-consuming, unpleasant and effortful for her. She can do it. She’s a fluent reader with excellent comprehension, but it takes gargantuan effort.

 

My response:

 

“Nope. She likes sport, films, music. Of course she’ll listen when I read books aloud, but my point is, why should she HAVE to love reading?”

 

At this juncture, another librarian chimed in (I had no idea they hunted in packs):

 

“She doesn’t. I think you’re misunderstanding the quote. Studies show readers vote at higher rates, volunteer more, more involved civically.”

 

Yes, I’m sure those who can read are more likely to vote etc. This has nothing to do with loving reading. So I asked for some sources:

 

“Could you point me to the studies which show actual causation between a love of reading and those attributes? Again, my daughter would deny.”

 

I’m still waiting for those studies. In the meantime, the second librarian had more to say:

 

“The quote doesn’t mean the inverse is true. I hope she finds her ‘hook book’ someday.”

 

I replied:

 

“She feels patronised and condescended to by such a hope. As do I.”

 

I may have hit a nerve, as the next response attests to:

 

“I don’t understand your negativity. I can also say: children who develop a love of exercise will have better lives. Would you object? Peace.”

 

Yes I bleeding-well would object actually. I hate exercise. So does my youngest (the bookworm). We like dancing and tennis and swimming in the sea. These activities give us exercise, but we don’t do them for their exercise value. I have to force myself to go to the gym because I know it’s good for me, but there isn’t a personal trainer in this universe who would be able to make me love exercise.

 

You know that feeling you have when you’re doing something and you think, “This. This is the purpose of my life. This is what I was born for.” That’s the feeling I don’t get when I do housework. I hate housework. It puts me in a very very bad mood. My two younger children know not to ask me for favours if there’s a laundry basket or a broom in my hand. As infants they had extensive vocabularies but when I once showed them an iron, neither of them had a word for it.

 

So, I can do exercise and housework, but there are six million other things in the world I’d rather be doing. Would you really call your life better than mine because my house is messy and I can’t touch my toes? I would call vapid smugness if you dared. So I said:

 

“Actually, the negativity stems from false pity of those who don’t share your love of reading.”

 

The original librarian decided she wanted the last word by saying all she was trying to do was share her passion for inspiring children to love books.

 

This is a noble passion. I love books too. I work with children to help them become readers and writers and if they become readers for pleasure, I’m very happy for them. But I wouldn’t dream of sharing my passion for books through condescension. This would be very uninspiring indeed.

 

I’m perfectly happy with my daughter’s stance on reading for pleasure. She is literate. She gets good marks in all her subjects at school. She chats away on social media, shops online and does all the other things a literate person does. She just doesn’t like books. She, like many people in this world, simply prefers other things to reading.

 

I did a quick Facebook survey of my friends and received many interesting replies. The survey said:

 

How many of you are prepared to come out of the closet as non-bookworms? How do you view statements like: “Children who develop a love of reading have better lives”?

 

Here is a list of other people from that survey who don’t like reading:

 

Illustrator – “I get bored easily when I read, I lose focus and can’t follow the story.”

 

Chemical engineer (a very successful, senior chemical engineer)- “I never read as a child or even a teen and I think I’m doing okay.”

 

Mum of a very bright pair of twins – “One of my daughters doesn’t like to read, I have one book worm twin and one non book worm twin. It won’t stop her from doing well, she just prefers to learn from doing not from reading.”

 

Photographer and disability care worker – “I no longer read fiction. After growing up in a family of bookworms and being one myself until my mid 30s, I often found myself reading until the wee hours of the morning, even when I had to get up for work early. I finally made the decision that I simply don’t have enough time to spend hours of each day in other people’s fantasies. I read fiction to my children for half an hour most evenings but my personal reading is focused entirely on text books and factual information.”

 

When I asked him if his early immersion in fiction gave him a better life he replied that it didn’t, though it did help him escape some horrible reality for a while. We all have means of escape: films, hobbies, friends. It doesn’t have to be books.

 

Another photographer (with, might I say, one of the most enviable lifestyles I know) – “I’m such a non-reader!! I plan on staying that way, so happily. Yep that comment is as stupid as my opinion that children who horse ride live happier lives….oh hang on…no that one is true!”

 

Mum of very bright ex-student of mine – “He reads to learn about the things he’s interested in, he can follow diagrams and instructions that baffle me. He has an organised, sequential approach to putting complex machines together.”

 

Mum of an accountancy student – “She rarely reads, doesn’t enjoy it and finds it a real struggle. She only got diagnosed as dyslexic last year though, which kind of explains it. She has an awesome life, she’s studying accountancy and loves maths! She is also a brilliant artist and rides her mountainbike really fast! People who ride bikes have better lives than those who don’t! FACT!”

 

Translator at the European Commission – “For the record, I’m still far from being an avid reader as an adult. There are other things vying for my attention and by the time I do pick up a book in the late evening I rarely get through more than a page before I fall asleep. This doesn’t make my life any better or worse than anyone else’s.”

 

Graphic designer – “Non reader and my life is frickin’ awesome! I was married to an author for nearly 10 years, so books were a huge part of our lives. I read a lot for a while there, probably because I thought I should. I loved those books, but it never made me thirsty for more… one crappy chapter and I was gone…”

 

Disability support worker (yep, I know a few) – “I hate reading. Give me pictures any day.”

 

I know many more people who don’t love reading, including a screenwriter, a hedge-fund manager and several successful business people. I’m sure we all do.

 

One comment did pluck at my heartstrings though, from the mother of a little boy:

 

“I guess it makes me feel slightly anxious as he doesn’t enjoy reading at all and me and his dad absolutely love it. It was the background to both our childhoods.”

 

It’s that sort of fear and anxiety that makes me cross with the ‘better lives’ statement. Make no mistake, being literate is an essential part of being able to function in a complex society. But a love of reading is a personal thing, not a quality of life deal-breaker. Parents all over the globe fret about their children reading for pleasure because of this fallacy. For goodness sake, relax. Literacy and love of literature are two completely different things. The former is essential and the latter is personal.

 

I do think, though, that you should give Hatful of Hollow (second down on the left of my picture) at least three listens, and if that doesn’t change your life for the better, then you might very well be dead inside.

My 16 year old daughter doesn’t want designer clothes or brand-name devices. She eats everything on her plate, always has. She’s never begged me for new pets, holidays or toys and she’s never had a boyfriend or been to parties or tried tobacco, drugs or alcohol.

 

The downside is that she also can’t explain symptoms of illness or injury or retell anything that’s happened to her outside my supervision. For that reason alone, I confess I have persevered with unproven methods of communication well beyond my very strong doubt.

 

Chloe’s genetic disorder, Cri du chat syndrome, has caused her to have multiple disabilities, including the inability to talk. Her brain cannot control her mouth, which also means she can’t chew.

 

Back in her younger days, I had boundless optimism and very little experience. This perfect mix led me to the doors of Rosemary Crossley at the DEAL Centre in Melbourne.

 

Rosemary was charismatic, articulate, personable and funny. She appeared to us as something of an Australian grand dame who took no nonsense, boomed instructions and spoke most convincingly about her successes with Facilitated Communication (FC).

 

As a lead in to FC for Chloe, Rosemary showed me how to hold Chloe’s arm and hand and help her touch pictures in a folder in order to express simple thoughts. I can’t remember what those initial pictures were now, but I think they bore some resemblance to the PECS (Picture Exchange Communication System) cards she currently has in her classroom.

 

From the very outset, Chloe was extremely reluctant to participate in the FC sessions. She constantly withdrew her arm and looked everywhere but the cards. We took a folder home to practise with and she was intent on crumpling the pages and throwing the cards.

 

Nonetheless we persevered and received funding for an electronic communication device. The device consisted of a board with buttons representing a simple vocabulary, e.g. eat, drink, play outside, watch TV etc.

 

We were able to record our voices for each button and change the pictures, in order to tailor-make the device according to Chloe’s particular vocabulary.

 

The goal was to start with broad concepts and introduce finer ones over time with a view to having Chloe type out her thoughts and wishes on a modified keyboard. I hushed the nagging voices in my head saying, ‘How is she ever going to learn to spell?’

 

I tried as much as possible to let Chloe push the buttons by herself, as her physical disability didn’t prevent her from doing so, but I was advised that holding her arm and watching her eyes would help her express herself more clearly and quickly.

 

Chloe was having none of it. She angrily pulled her hand away and pushed the device to the floor whenever she could. I had seen that behaviour before when we used to try to get her to paint or draw by placing her hand around a brush or a pencil. She would instantly relax her grip, but if you persevered, she would grip the instrument then bite down on it viciously before spitting it out.

 

The consistent message was: Chloe will not be directed and she will not perform. We abandoned FC altogether. Though saddened by the realization that this technique would not help Chloe ‘find her voice’, I was proud of my girl for standing up for herself.

 

This is also why we are very amused by the well-meaning ‘artwork’ that her schools send home at the end of every term. There is very little of Chloe’s effort in any of the wonderful pictures or collages the put into her schoolbag, but I appreciate their effort to get her to participate.

 

What did jar me fairly recently, though, was a note that came home from a very young, very new speech pathologist at the school who had met Chloe for the first time. She took it upon herself to send home a note saying, ‘I think Chloe has a lot to say.’ She was asking my permission to allow to Chloe to embark on yet another PECS cards program. Over the years, I allowed the school to use PECS with Chloe, but she made very little progress and we all accepted that.

 

It was the statement ‘I think she has a lot to say’ that kept running around my mind. The implication was that perhaps if someone did a little more to help her express herself, then we might all be pleasantly surprised. I know that the speech pathologist’s comment came from a good place and a good heart and I respect her optimism, but that statement made me uncomfortable.

 

I’d like to make this very clear: Chloe is not trapped inside a disabled body. She is our beautiful, funny, humorous, affectionate, profoundly disabled Chloe. She is not a tragic figure and I entertain no mawkish Stephen Hawking fantasies about her or her potential. I know there are other disabled people whose expressive language is well below their receptive language, but Chloe is not amongst them.

 

Chloe doesn’t care if people stare at her and in fact is quite adept at choosing the best moments to engage in a type of full-throated, open-mouthed shouting that we affectionately call ‘flip-topping’ – after a famous advert for toothbrushes in which a character had a flip-top head that allowed him to clean his back teeth properly. The toothbrush in question was marketed as an alternative to having such a head. When Chloe shouts, she opens her mouth so wide that it almost looks like the character in the advert.

Some casual flip-topping

Chloe’s flip-topping is usually reserved for libraries, cinemas, heartfelt speeches and restaurants. We have learned not to be too mortified, but do employ an array of distraction techniques to minimize the sonic damage.

 

Chloe isn’t aggressive or mean in any way, but her behaviour is like that of a toddler. She will pull off her hat or hood even if it’s raining, she’ll dive into any puddle she passes if not restrained, she would stay underwater for too long in the pool if you let her, she would play with the contents of the cat litter tray if she could find it, she’ll throw vases, plates and glasses off surfaces for the sheer sensory thrill and crawl across the shards if you’re not fast enough. She once even burned her eyelashes on some birthday candles on her cake at school when one of her teachers failed to heed my one great warning: ‘Her arms are longer than you think and she’s faster than you think.’

 

We don’t normally refer to toddlers as ‘adults trapped in a child’s body’. We have expectations of their learning and growing based on what we know about them and other children.

 

I have formed similar expectations of Chloe, based on what I know about cri du chat syndrome and her progress over the years. I never thought I’d say this, but I’m pretty certain she has reached her potential. Long, laborious effort will not result in any significant improvement in any of her skills. She will not become less dependent on others.

 

Chloe likes being warm, fed, comfortable and entertained. After 16 years of trial and error, observation and routine, she and I have basically established what that means. All the PECS cards in the world are not going to make a difference. Hours are spent on teaching Chloe to differentiate “I want my sandwich” from “I want my banana” – but the distinction will not allow her to live without full supervision. And anyway, she basically just wants to eat, because she likes food. Just give her some food. I can guarantee you that will make her happy.

 

Chloe is a broad brushstrokes kind of girl (though she’ll eat the paintbrush and the paint if you let her). She has no concept of the future or art or literature. She likes music but her preferences aren’t particularly nuanced. She is not interested in animals but is deeply suspicious of birds. I think she must have been flapped at rather distressingly on some outing her respite carers took her on.

 

She will accrue some additional likes and dislikes on her way and will lose some of her interests. She was once intensely entertained by the clothes dryer. The combination of warmth, noise and spinning gave her hours of entertainment for months. Then one day she refused to give it a second glance and that was that.

 

I have been accused by some of abandoning hope. I haven’t done anything of the sort. I have high hopes for Chloe. Of course I do. I hope her scoliosis doesn’t progress to the point that her lungs become crushed. I hope she doesn’t get a fatal infection. I hope that when I am no longer able to care for her that she gets to live her life with plenty of heat, food, comfort and entertainment. I hope that she doesn’t suffer abuse from her carers, which I might never really know and have very little control over. I live my entire life in hope.

 

So the message for people in the field who want to help Chloe ‘find her voice’ is this: she has already spoken. Please try not to spray-paint her with your wishful thinking. Instead, have a conversation with those who know her best and pay attention to her history. I’m not trying to get anyone to abandon hope, but I do recommend embracing reality.

Several people have sent me links to the new Weird Al Yankovic song “Word Crimes”, thinking I’d enjoy it, being in the business I’m in.

You can watch it here.

Nothing could be further from the truth. I cringed all the way through it and though I consider myself easy-going and open-minded, I was genuinely saddened by it. I think the time has come to make a statement about it.

I sit opposite children and adults day in and day out who have language disorders. They courageously struggle with the task of getting words on and off the page. They often work many times harder than those around them just to keep their heads above water in the classroom.

 

“Writes like a spastic” apparently. Nice.

This song, which threatens physical violence towards people who don’t use a prescriptivist version of English is just plain nasty. I have a daughter with dyslexia and to think that some people find that funny, or her written output amusing, or her attitude ‘lazy’ or ‘stupid’ is beyond belief!

People have argued that it’s Al’s satirical take on people who are overly prescriptive, the so-called Grammar Nazis, but let’s not fool ourselves. The target of this song is clearly those who don’t use English a certain way, not those who correct them.

A very well written piece on the subject can be found here.

By the way, I also have a 12 year old profoundly disabled daughter who does in fact drool. Thanks, Al, for bringing international ridicule and disdain to two thirds of my children.

Yes, thanks Al, she is out of the gene pool.

vowels

Aside from providing a framework for study of the sounds and patterns of single vowels in spelling, this topic also has an extensive theory section outlining common misconceptions about vowels in everyday teaching. It presents an alternative metalanguage that assists even struggling spellers to master linguistic concepts more easily.

Resources: Single Vowels worksheet and spelling drill