October is White Cane awareness month and so I would like to re-submit this post for your perusal and maybe get this movement going once again. I would love to see lots of people posting to send October 2017 out with a bang!
Dave Steele’s mission continues. RP’ers take note and a picture of yourself and post on all social media where you have an account. The #RPlikeme movement is sweeping the world as RP awareness continues to build momentum.
A Bit about Dave
Dave Steele, our Poet Ambassador, has been on a mission since his sight began to drastically fail about four years ago. He had known that RP ran in his family since he was seven years old which was when his sister had been diagnosed, but he never thought too much about it. Like so many others with this type of slowly progressing disease, he lived in hope that the debilitating nature of the disease would not affect his life until he was much, much older.
Dave had a wonderful career as a professional singer, touring the world as a cabaret act on cruise ships and at hotels and holiday parks around the world. He decided to settle down in his early thirties and began selling cars while still performing part-time. He had noticed changes in his vision from he was in his mid-twenties, however; at thirty-nine there was no denying it, RP was about to drastically affect his life.
After a few visits to optometrists and specialists, it was confirmed that Dave was now legally blind. He could no longer drive which meant he could no longer work as a car salesman and he was immediately terminated from his position. It also meant that visits with his young daughter many miles away would come to a demoralizing halt. His young family in Manchester, UK was swept into the chaos of poverty as bills began to pile up. Life looked bleak and overwhelmed by his circumstances Dave asked his sister for advice, after all, she had walked a few more miles down this road already.
Dave’s sister suggested he get support by joining Facebook groups dedicated to people suffering from RP. There he met many people going through the same as he was. He was later invited to sing at a meeting for RP and Usher Syndrome sufferers. Thus, began Dave’s quest to bring awareness to the injustice and prejudice that visually impaired people suffer.
It all began with a Song
The song that Dave had chosen to sing at the meeting in Newcastle was “Stand by Me” by Ben E. King. He liked the beginning of the song as it reflected the dark and fear that so many suffer, not just the visually impaired. He then changed the lyrics to further reflect those feelings. It was a hit and from there, with friend Simon, an Usher’s Syndrome sufferer with a love of music and a home recording studio, they recorded the song and video and uploaded it to YouTube. In the proceeding weeks and months, support for the song spread across the world and the poetry naturally progressed from there.
Find out more about Dave Steele at the following links:
Our own Ice Bucket Challenge
A few years ago the Ice Bucket Challenge was huge. There aren’t many who haven’t heard about it or seen the videos. Well, Dave, inspired by Usher Syndrome groups got the idea that we need our own movement to grow awareness of RP. The challenge is simple if you have RP take a photo of yourself and post it to all social media outlets that you are involved in. Post it where ever you can with the hash tags #RPlikeme and #StandbymeRP. I have also really enjoyed seeing people put a little about themselves, when they were diagnosed, how they are coping, even what career they are in with the hash tags. Remember, this movement is bringing awareness about RP, but it is also giving hope and support for all those RP’ers who might still be in denial or who feel alone. Lend your support and reach out a hand by posting your picture today! Even if you’ve done it before, let’s make the last week of October 2017 RP awareness week and post your picture!
I was diagnosed when I was 31. I thought I was just getting klutzy, but it turned out that being a klutz had nothing to do with it. I had worked in retail for years, but being a proactive type of person, I retrained to go into insurance. That didn’t quite work out, I’ve had a lot of problems getting work in the field, so now I write. I sometimes think RP has been a blessing, without it I may never have taken my writing seriously. Now it’s my job and I love it… well, most of the time!