Stories are important. Humans have been telling each tales for thousands of years, from cave paintings and campfire stories to videos and threads on social media.
And while reading can be a solitary pastime, shared reading has several benefits – pleasure (book clubs don’t exist just to be useful backdrops to fictional crime and/or romance!), community, improving literacy skills, and building a lifelong love of books, for example.
For all these reasons, we’ve been expanding our range of print and braille ‘shared reading’ books so that braille readers and sighted readers can enjoy stories together. Among these are the first two books in the ‘Austin’s Amazing Adventures’ series by Dave Steele, the Blind Poet – The Big Test! and The Unstoppable Duo! – which can be read three different ways. You can read the print, listen to the author read the book using an RNIB PENfriend (or by streaming the audio by scanning an accessible code), or read in contracted braille.
Before being diagnosed with retinitis pigmentosa 12 years ago, Dave worked in car sales and as a singer. Today he has three poetry books, as well as two children’s books, published. We spoke to him about his new career in writing.
Before your RP diagnosis you were a singer. How did your new life as a poet start?
“When I was originally diagnosed with retinitis pigmentosa, which was back in 2014, I'd worked as a singer for about 20 years and went through a kind of period of coming to terms with my new diagnosis of sight loss.
“As a family, it really impacted not just me, but my whole family. So, I lost my job, I was working in car sales. I was always also working as a singer. So, everything I did involved driving and getting around independently so I really struggled to come to terms with my diagnosis not just because of the fact that I was losing sight, but also the impact it was having on my family financially. I felt guilty for that and what happened was when I was probably at my lowest, really, really struggling with anxiety and depression, I got invited to a support group for people with RP and Usher syndrome and when the organisers of the support group heard that I had previously worked as a singer, they said to me, would you come along and sing some songs and be the entertainment for the support group that day?
“So, for me that took away the anxiety of being around other blind and visually impaired people for the first time, because I was really nervous about going to the support group. So, the night before going to the support group, I'd agreed to be the singer because being on stage and having that kind of role was my comfort zone and obviously going to do that at the support group took away that anxiety. I was going over ideas of what songs to sing, and I thought it'd be really cool. I kind of had this Eureka moment where I thought it'd be really cool if I could take a song that everyone knew, but then change the words and talk about my experiences so far, living with low vision.
“So, I rewrote the lyrics to Stand By Me by Benny King, and when I performed the song, which I called Stand By Me, RP; when I performed the song the following day at the support group, instantly the room changed. People were coming up to me, some of them in tears, some of them hugging me, shaking my hand and saying that the words that I'd written were describing how they'd always felt about their experiences living with blindness and living with sight loss. So, something clicked in me where I thought this is something I could do to make a difference. So, for me, poetry and music is the same thing. It's song lyrics. It's storytelling.
“It's a way of making an impact with people in a way that just kind of speaking about things doesn't do. So, I started to write poetry every single day about all the things that me and my family were going through and sharing them online. And that was when I started to get messages from people saying the same things as they said in the room that day that it was like I was kind of speaking their words and their journeys, but also what made it more than that was when I started to post these poems on to social media and support groups, people were saying that they were using my poems as a way for them to explain to their friends and their family and their loved ones how they were feeling. So, it was helping people all over the world and that just encouraged me to write more and more.”
It’s clear that lots of people with sight loss have found your poems to be a lifeline, from expressing shared experiences to educating friends and family. What have you got back from becoming the Blind Poet?
“I think for me, you know, like I alluded to there, the biggest thing it gave back to me was my purpose because when I was first diagnosed with a disability and diagnosed with sight loss, as a lot of people tend to experience, it almost feels like the world closes off from us at times. There's a real high unemployment rate within the sight loss community and it's nothing to do with the attributes of the people within our community. It's to do with the lack of awareness and education out there and the fear surrounding disability and sight loss, in particular. So, I felt like the things that I could normally do before my diagnosis, the door would kind of shut on that. And this gave me a reason to feel valued again that I could help people.
“And actually, you know, the more I started to write and the more of an impact my poetry started to have around the world, it kind of made me realise that I had to lead by example. And that's that naturally spurred me on.”
Obviously, storytelling is very important to you – which books made the biggest impression on you as a child?
“Books wise, I read a lot of Roald Dahl when I was a kid. For some reason Danny the Champion of the World seems to be the one that really stuck, and James and the Giant Peach. Those kind of stories. But for me it was more music, my storytellers, my poets, that came from the storytelling within music, within songs. That was, I think, more than books, was the thing that had the biggest impact on my life. I grew up with older siblings, so I grew up on a mix of soul – Motown, Luther Vandross, those kind of artists – and then the Carpenters and things like that. So, the storytelling aspect, every song would take you on a journey, you know.
“For a young child, where you hadn't experienced heartbreak, you were able to close your eyes and listen to these singers tell a story and you would experience and feel things that you know were far beyond your years and it could take you places and that's where music has always been a massive, massive part of my life and I think, you know, with the poetry that I do now, what I love about it is for those people who are affected by disability, sight loss, whatever, they can kind of have a personal experience of sharing the things that I'm talking about.
“But for those who are reading my poetry? Those family members, loved ones, people who have no experience of disability or vision loss, that storytelling within that style of poetry. Music allows anyone with no experience to kind of listen and place their feet inside our shoes. And that's it. That's a really unique experience.”
How did the Austin’s Amazing Adventures books come about?
“I read an article in a newspaper about six or seven years ago featuring the children's author Julia Donaldson. And basically in the article she said there needs to be more children with disabilities featured in children's stories so these children can see themselves within the characters of the books that they're reading, which allows them to feel more seen and also for them to be better understood by other children that are reading these books and to break down barriers. As soon as I read that article, I just went, ‘Oh my God. Yes there does’. And I literally created this whole concept of Austin's Amazing Adventures in one night and I wrote six books. I wrote six stories in one night and developed this whole world.
“And it just kind of started from there, but I knew instantly that this wasn't going to be an easy journey, to get these books exactly where I wanted them to be with not just storytelling, because the idea was that I create a world, a book series, where the main character is a young boy based on my son, but in the story he's a young, visually impaired child going to a mainstream school and about the interactions that he has within the school.
“So, it's set in a real-world environment, but it was very much in the front of my mind to have other characters within the stories where we could kind of reflect and highlight not just other disabilities, but also additional needs, any school that you walk into around the world, there'll be different children living with different challenges and giving that representation and breaking down those barriers for those kids. So, you know, having characters like we've got in in the second book, The Unstoppable Duo!, which we've got a character based on my nephew who passed away on my wife's side, Josh, who lived with a condition called Duchenne muscular dystrophy. And he was in a wheelchair so giving that representation to children in wheelchairs.
“But in the future, there's going to be characters within the story where we break down barriers for things like ADHD and autism and all the different things that you see within any school. So that was really, really important to me. But also, as I said, the accessibility side as well, which was really vital for me. It took a long time for me to get the book where it is now, where I can proudly say it is one of the most accessible children's book series in the world because of all the different features in one place.”
Are there any other PENfriend-readable books?
“So, there's not. There is no other children's book or in fact, there's no other book in the world that has braille, large print, a free audio version via the accessible code and the PENfriend device. All that all in one place. So, it gives you not just the story, but also the image descriptions as well. That was an idea I had right from the start and to have it now out there and in the world where everyone can enjoy these books is something I'm really proud of.”
Did you already know about the PENfriend and think ‘this is the way forward’, or did you want the audio version and then found the PENfriend as the solution?
“I knew of the PENfriend, it’s a really well-established piece of technology and obviously when it was first designed it was designed as a thing for reading labels but you can also have the ability to read books. I knew obviously that it had that ability, but when I signed my publishing deal, I just so happened to sign it with the inventor of the PENfriend.
“So that just fell into place perfectly. And then, what I really loved about the PENfriend devices, not only could children, hear me reading the story and reading the poetry as it's meant to be read, but they could also record their own versions of them. Reading the story through the PENfriend and also actually even get like a grandparent, or someone who is not going to be around forever, to have that moment held in time of a loved one reading the story to them, which is a beautiful thing. So, I really, I really love that about the PENfriend, but I wanted to make sure that it wasn't just, you know, these stories weren't just for the PENfriend that we that we were able to access all the things that the PENfriend does without a PENfriend device, which is why we have the code on the back and now obviously the braille as well with the story being narrated but also the narration for the image descriptions for the beautiful illustrations too.”
You can buy braille editions of Dave’s children’s books from our Shop and watch The Film I’ll Never See, part of BBC One’s Our Lives series, in which Dave faces final sight loss while finding purpose in spoken-word poetry.
