Author: Samantha Wheeler
Publisher: University of Queensland Press
Themes: Presume competence, Augmentative and Alternative Communication (AAC), disability, siblings, family and resilience
The key theme of this book is to presume competence in people with disabilities because everyone has a voice, regardless of whether they can communicate in traditional ways. It is written from the perspective of Ava, an eleven-year-old with Rett Syndrome, a disability which means she has little control over the muscles in her body. Ava is unable to communicate through speech or use her hands to point to a communication system. Yet, as she tells the story through this first-person narrative, the reader gains insight into her sassy personality and agency. For example, in Chapter Two (pages 27 & 28), Ava responds to being stared at by Bella, her sister’s friend, by pulling her hair:
Bella’s still staring, her lip still curling. I try to look away. I swear I try. But at the last minute, just as Dad’s about to turn me, I reach out and grab a handful of white-blond hair. It’s soft. I pull. Hard.
‘Owww!’ Bella howls.
Dad struggles to unlatch my fingers, and Mum rushes over and fumbles to pull me away. But my fingers are gnarled and stiff and stronger than they look.
‘Mum! Dad! What the….’
Nic and Mel are running towards us, but Nic stops at the fridge, her face creased with sleep, her eyes wide.
Bella’s hair’s in my fist. Sophie’s mouth’s open. Dad’s fingers are over mine, trying desperately to tug me away.
‘It’s alright, Nic,’ Mum soothes. ‘We just had a little accident.’
‘An accident?’ Nic yelps. ‘Ava, let go. This minute.’
My muscles finally give in and Bella’s hair is released.
Bella jumps away like a cat and rubs her head while Sophie, Nic and Mel crowd around her, asking if she’s alright.
‘I’m sorry, Bella,’ says Mum, her voice tight. ‘Ava didn’t mean it.’
But she’s wrong. I did mean it.
And I’d do it again in a flash.
This excerpt reveals how many of the people around Ava have deficit thinking about her disability. Ava’s mother apologises for Ava’s behaviour, believing that her hair pulling is unintentional. However, Ava tells the reader that she did mean it ‘And I’d do it again in a flash.’ Through this mischievous action, we realise that Ava does have a lot to say. Because she does not have access to a robust form of communication, she is frustrated and often invisible, and her actions are frequently misinterpreted. Ava is viewed by her parents, her teachers and a speech pathologist, as lacking in competence because she is unable to demonstrate what she knows. Ava’s teacher states on page 165 ‘…not everyone has the capacity to communicate.’ Yet, Ava is determined to prove them wrong.
Communication is viewed by many as a signifier of intelligence; therefore presuming competence is strongly connected to communication. Yet, this book gently guides the reader to realise that our unconscious bias is a barrier to seeing the capabilities of disabled people. The author draws on the social model of disability to convey that the obstacles to Ava’s participation are within the environment, not within Ava. In the story, Ava meets an occupational therapist who is determined to assist her in accessing a system of communication. As well, Ava makes a friend, Aimee, who uses a speech output device, and Ava realises that if she learnt to use a device, she would be able to have a voice. Along the journey to Ava’s increased independence, she encounters family issues, and the theme of resilience is also woven throughout this book.
I usually do not recommend books about disability unless disabled people write them. This reasoning is because non-disabled people usually portray disability from their non-disabled perspective, adding to the disempowerment and persistent inequity that disabled people experience in our society. But this is not the case in ‘Everything I Never Said’. The author, Samantha Wheeler, draws on her experience of parenting her daughter, who has Rett Syndrome, to carefully and sensitively imagine how Ava, the main character, experiences the world. This book is a celebration of Ava’s emerging autonomy and capacity for independent decision-making. It is suitable for students from primary upwards and should be on every student’s reading list.
Teacher’s notes are available at this link:
If you would like to explore your own beliefs about the presumption of competence in disabled people, below is a checklist I have developed. This checklist is a way of developing a critical consciousness of the notion of ‘presumption of competence’. Please read each statement and tick the box that represents your level of agreement. When completed, total each section. If your score falls mainly within the ‘agree’ or ‘strongly agree’ section, you have a strong understanding of the presumption of competence. If your score falls within the other areas, it would be helpful to reflect on your values and beliefs regarding the education of students living with disability.
|Statement||Strongly Disagree||Disagree||Neutral||Agree||Strongly Agree|
|You recognise that people with disability may understand far more than they can demonstrate.|
|You speak to people with disability in an age-appropriate manner, although you may adjust this for each person’s preference to incorporate fewer words or softer speech.|
|You find ways to support the communication of people with disability through words, picture symbols, sign language, speech-generating devices, vocalisations, eye gaze and gesture.|
|You treat each person with disability with the presumption that they have a rich set of thoughts, feelings, opinions and ideas they may be unable to express.|
|You avoid speaking about people with disability in their presence as if they are not there. Instead, you talk to a student directly and offer them the same amount of respect you would offer anyone else, even if they cannot respond.|
|You hold up your side of the conversation even if a person with disability is unable to hold up theirs.|
|You provide choice to people with disability and to support decision-making.|