Our Online Editor Zein explores the work of an activist that has inspired her.
Growing up with Retinitis Pigmentosa (RP), I’ve always admired those that have spread awareness about RP, blindness and sight loss. We all have that one person we idolise or see as a role model, and while many of us are lucky to have supportive families who are there for us and believe in us, we still yearn to meet people who share our very experiences.
It wasn’t until a Discord call with one of my friends in the RP community that I came across the existence of Dave Steele: The Blind Poet. When he posted on an RP Facebook group that he was giving away a complete set of his Stand by Me RP poetry books for World Book Day, I requested and received a set of my own. From the first sentence, I was hooked. Even though RP comes in all shapes and forms, I teared up because I knew how challenging life with RP can be, and it was so heartwarming to see Steele share his experience so openly. I stayed up until the early hours of the morning, until I finished his third poetry book. Later that day, I messaged him to let him know how much his words had impacted me, and since then we have been friends. One day, I hope to get to meet him in person.
In 2014, Steele was diagnosed with RP and, like myself, is severely sight impaired. At the time, he and his family struggled with his loss of independence and subsequent unemployment. Indeed, one of the toughest things most people with RP undergo is adapting to a position of relative dependency. Steele looked to social media to share his RP journey, and was surprised by the misconceptions and stereotypes about RP. However, he was inspired to create ‘Stand by Me RP’ when a member of an online group encouraged him to utilise his songwriting skills and perform at a meeting for people living with RP and Usher Syndrome.
Since 2015, Steele’s Facebook has grown and is now known as the largest RP group online. Volume 1 of Stand by Me RP was then released in February 2016, and within its first week became the #1 poetic release in the US and Australia. On that same day, Steele received the phone call confirming his match with his Guide Dog Christopher, who we all love and see in Steele’s posts. Being on the waiting list for a Guide Dog myself, I cannot wait for the day I get that life changing call. In March 2016, Steele released Volume 2, which became #1 poetic release in Europe on its first day. He later completed the trilogy with the third book in February 2018.
In 2019, Steele kicked off his first ever book tour in America, sponsored by Low Vision Specialists of Maryland and Virginia and the Low Vision Shop, where he got to sign books, deliver a keynote speech, and attend meetings.
His advocacy work is recognised on a local and international level by both the low vision community and able-bodied communities. He has been featured on Radio and TV, and has been honoured through his receipt of the Pride of Bury Community Hero Award. He is also a finalist for the See Differently Awards 2022 curated by the Royal National Institute of Blind People, in the category of Best Social Media Impact of the Year.
This year, he published his first ever children’s poetry book: Austin’s Amazing Adventures. It revolves around Austin, a young boy who is slowly losing his sight, and his trusty guide dog Joe, as they tackle everyday life. As a character which children living with RP can relate to, it is something I wish I had while growing up. Nonetheless, it is his poems which now remind me to not stop pursuing my dreams, and they are a beacon of hope for the RP community.
Read more about Dave Steele here.
