‘My grandma has dementia’: Alex on why his children’s books don’t shy away from impairment. — Scope | Disability forum
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‘My grandma has dementia’: Alex on why his children’s books don’t shy away from impairment.

Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger

Alex Winstanley speaks to us today about how lockdown and life with his grandma inspired a new collection of children’s books seeking to normalise impairment from an early age.  What do you think to his ideas?

 Headshot of Alex smiling at the camera

What first inspired you to write children’s books centred around characters with impairments?

I am extremely passionate about giving a platform to people with lived experience, to have their voices heard. I set up a not-for-profit social enterprise in 2019, alongside one of the young men I cared for, because I grew tired of seeing disabled people being undervalued and underrepresented. When the first lockdown prevented our organisation, which delivers training led by disabled young adults, from getting into schools, I wanted to find another way to positively impact children and young people. This is where the books started. Through the books, I can give representation to characters from all backgrounds, demonstrating a truly diverse and inclusive society for children and young people. People who might looks, sound or act differently to yourself doesn't mean that they should be treated or seen in a negative manner, and I really want children to see that difference should be embraced and celebrated, not challenged. 

Did the people around you influence your portrayal of the characters?

All of my books are influenced and informed by real people with lived experience. My first book, 'My Grandma Has Dementia’, was inspired by my own grandma. I had always wanted to use my grandma's and my family's experiences of dementia to help children to better understand the condition. Dementia is one of many taboo subjects that families often think we should hide children away from. I don't think that this strategy is ever successful and believe that we should support children to be aware of the many health conditions that impact members of our families and our friends. Only then can we empower children to offer support and to reduce any anxieties they may have about particular family members or friends. 'My Grandma Has Dementia' has since won an Alzheimer's Society Dementia Hero Award for representing dementia voice. This is so important as that is exactly what the books aim to do.  

What do you think about the historic representation of disabled characters in children’s books?

Disabled characters in children's book are historically non-existent. Either that, or they have been placed in a book as a token gesture or often to make people feel sorry for those characters through a medical model mindset. I would suggest that this reflects society's broader attitudes towards disabled people. I wanted to instead empower disabled characters to feature prominently within my books, often without having to reference any disability at all. For example, in 'My Uncle Has Depression', the niece character who supports her rugby-playing uncle, uses a hearing aid. This isn't directly referenced but I wanted to make sure that children noticed that, just because someone might have an impairment, this doesn't mean that they can't achieve their potential and support others to do the same. This is the same in 'My Cousin Has Tourette’s', in which the supporting main character is a wheelchair user. 

Who has been your most favourite character to write so far?

It has to be the character based on my grandma. Although I have loved exploring different characters and using them to represent people's lived experiences, I couldn't look past this character. Adam Walker-Parker, who illustrated the book, did an amazing job of making the character look and feel just like my grandma. Although my grandma passed away just before the book was released, her legacy now lives on and will positively impact children for generations to come. This is something that I am extremely proud of, and I know it would make her smile too. 

Do you have any plans for future books?

Since 'My Grandma Has Dementia' was released, I have also released books on a range of long-term health conditions and disabilities. This includes, 'My Uncle Has Depression', 'My Brother Has Cancer', 'My Cousin Has Tourette’s' and 'My Child Has Cerebral Palsy'. My sixth book, due out later this year, will be focused on a person living with an eating disorder. This is another subject that isn't spoken about widely enough and I am really looking forward to the challenge of helping families to start those conversations, in a positive, realistic, and supportive way. 

Thank you to Alex for speaking with us.  We're big fans of your work and wish you well :)

Over to you: 

  • Can you remember any children's books from when you were younger with a disabled character? What were they like?
  • What do you think to the premise of Alex's new book featuring a character who has an eating disorder? 
  • Do you have young children, and what are the characters like in books they tend to come across?
Any thoughts and messages for Alex welcome too, just leave a comment below.
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