Melody Goodspeed: At AFB, our mission is to create a life with no limits for people that are blind and vision impaired. And with that also too, we wanted to highlight just some amazing people and we're so glad to have you. I know you're here, we have the blind poet, Dave Steele, who has become a friend of mine and I am so excited that he's here with us today. He's going to share his journey, and we're going to talk a little bit about his journey through life and how he is, and how he's found such a love for poetry, and how it's been his passion, and how he's using it for his advocacy. So without further ado, I'd like to introduce you to the blind poet, Dave Steele. Hi Dave.
Dave Steele Hey, how you doing Melody? Thank you very for inviting me and a big thanks to everyone at AFB for having me here.
Melody Goodspeed: Yes.
Dave Steele Because we are in the UK, it's nearly... It's just gone 9:00 PM here.
Melody Goodspeed: We are so excited to have you. And especially at 9:00 PM. And also too, Dave was just telling me Manchester's has beautiful weather, but what I want to let everybody know is that Dave was supposed to be our master of ceremonies at our Helen Keller Achievement Awards at our AFB Leadership Conference this year. So we're happy to have him in this capacity. So I want to tell you guys, I first met Dave, he came to our office in Arlington and came to read poetry, and it was amazing and beautiful. So Dave, can you kind of walk us through your journey starting with how you've gotten to where you are?
Dave Steele Yeah, I'll try and be as concise as possible, because it's one of those stories that kind of goes on and it's an unusual story. It's one of these things where everything kind of happens for a reason. I'm a great believer in this now since I started to lose my sight six years ago. I'm a firm believer in that everything kind of happens at the right time, and all the challenges that we face in our past and all the things that we go through, give us the tools and the ability to do the things that we are meant to do going forward. And my story is kind of a prime example of that. So I have retinitis pigmentosa or RP for short. For those of you that don't know RP is a hereditary condition, there's no treatment or cure.
And generally the way it kind of presents itself is it starts off with kind of night blindness. So struggling from light to dark places, and then you start to lose your peripheral vision. So a tunnel closing inwards. And then once you lose your peripheral vision, you tend to then start losing your central, and then it generally results in blindness. So the way I kind of see at the moment is I can't see out my left eye at all. That's completely blurred now. In right eye, I've lost all my peripheral, and I've got a tiny bit of central. So I can still read texts if it's large enough, I can still see faces. But I have a guide dog called Christopher who's just asleep by the side of me right now. I use a long cane.
But as I said, my journey started six years ago. I always knew I had RP in my family. It comes from my mom's side. I have a sister with it, also two sisters with it, and my mom is completely blind with it. But I was always told when my sister was the first one to be diagnosed in the early '80s, that it wouldn't affect me until I was a lot older. So I kind of just put it to the back of my mind and just got on with my life. And I probably had the early onset of RP that night blindness from my early 20s. I was working as a singer, I was touring cruise ships and hotels abroad, and working all over the place doing musicals and different shows and singing a lot kind of soul music.
And I just got on with things and put it to the back of my mind. I was maybe in denial about it a little bit, but then the night blindness that I had wasn't really stopping me from doing anything. It was only a slight adjustment to how a normal person would see. But then six years ago, I went in for a routine eye test because I used to get myself checked just to make sure I was safe for driving and things like that. I walked in for a routine eye test and when they looked in the back of my eyes, the optician saw that the pigment was really quite kind of thick, and there'd been quite a dramatic deterioration since the last time I was checked.
And at that moment, my whole world changed. I walked out of that appointment being told that I had to stop driving straight away. I told my wife who was my fiancé then, who was waiting in the waiting room with our six-month-old son at the time, Austin, that I could no longer drive anymore. I told my employer, I was working in car sales at the time, and I was also working as a singer, and because I could no longer do test drives in my car sales job, they let me go, so I lost my job. And that first six to eight months, I really, really struggled, went through a lot of things that people with low vision and blindness in that early diagnosis stage tends to go through.
A loss of independence, loss of confidence, a loss of pride, a loss of purpose. I didn't know what I was going to do next. And then everything kind of changed from me that November. I was diagnosed in April of 2014. And in the November, the way it kind of changed was really quite a strange set of circumstances. My sister, who was the first one to be diagnosed with RP, advised me that the best way for me to come to terms with what I was going through, because I was battling anxiety and depression, would be to speak to people who were going through the same thing, through a lot of the support groups online and on things like Facebook.
So I joined couple of support groups, and through talking to people, they asked me to attend a meeting in a place called Newcastle here in the northeast of England, for people with RP and Usher syndrome, which for those of you that don't know, is the same sight loss of the eye, hearing loss as well. So they asked me if I'd come to this support group meeting and the night before the event, they'd asked me to be the entertainment for the support group. They'd heard I was a singer, so they said could I sing a few songs for them, being in entertainment. And I immediately agreed because that was my comfort zone. Singing and being on stage was where I felt quite comfortable. Whereas because of the low vision that I was having and my dramatic dip in vision, I was feeling quite anxious and nervous in just day-to-day situations of being out in public, where being on stage, I felt comfy.
So I agreed to do it straight away, and the night before the event, I was going over ideas of songs to sing. And I just had this idea where I thought it'd be a great idea to take a song that everyone knew, but to change the words so it would have more of an emotional response, more of an impact. So I chose the song Stand By Me by Benny King, because the line of when the night has come, and the land is dark, and the moon is the only light we'll see. Because that described night blindness to me. So I, in bed next to my soon to be wife at the time, I started to rewrite the lyrics to that song, I just started to change the words. And within 20 minutes, I'd written two new verses, changed the chorus, and made the song into what is now called "Stand By Me RP."
Melody Goodspeed: Can you recite that for us?
Dave Steele Yeah. So, well, the first verse is the same. [singing] So when the night has come, and the land is dark, and the moon is the only light we'll see. God, I forgot the words. I was thinking when the night has come, and the land is dark, and the moon is the only light we'll see. No, I won't being afraid. No, I won't be afraid, just as long as you stand, stand by me. And then he goes into the chorus, and then the second verse was, when our sight is all but gone, and lives grow dark, we are blind even though we still see. No, we won't be afraid. We won't be afraid, for together. We will beat this, this RP. And it kind of went on from there, I won't do the full thing. But then-
Melody Goodspeed: Oh, that was great. Thank you. That was beautiful.
Dave Steele When I performed that the following day, well first of all, when I wrote the song or rewrote the song, I remember turning to my wife and saying to her, "I've just had this idea and it's going to change everything." I didn't know what it was going to do or the journey it was going to send me on, but I just had this overwhelming feeling that it was good change how I was feeling. Because at that time, I felt I was at my lowest. I felt anxious for the financial pressure that I was putting on my family because I'd lost my job. We lost our house, we had to feed our kids on food parcels because we were struggling to get the support we needed. And it was a really dark time. And all of a sudden when I had this idea, I just felt like there was a light, and there was something that I could do, and all of a sudden it found a purpose.
And that was reaffirmed that day when I performed it for the first time at that support group in Newcastle. Because when I sang that song and they heard what I'd rewritten, people first of all were crying when they listened to my words. And then they were coming up to me afterwards and saying that I was able to describe how they felt about their journey with their low vision, and it was making them feel like they were less alone. And that flipped a switch in me where all of a sudden I started to write poetry every single day after that with everything that I was going through, the good days, the bad days, I wanted to share it all and document it in the form of poetry. Because music and song lyrics and poetry are the same thing to me. And that's what I kind of started to do. And that's where initially the poetry first started.
Melody Goodspeed: That is amazing. So can you tell us about what it was like when that light switched? I had to assume that there's some real healing that must have occurred then as well.
Dave Steele Absolutely. As I said, it just kind of gave me my purpose back and it gave me a reason, something that I could do. I always, as I said, when I was first diagnosed, I was getting turned down for jobs that I was more than capable of doing because of my low vision. I'd apply for things and people, as soon as I said to them that I was losing my sight, they would literally make excuses and I wouldn't get there. So I had to kind of make my own path and find something, and just once again, it's a very typical with my story and certainly how it's gone up to this day is, just at that time when I needed it the most, I found these words.
And then hearing that impact and that response that I was getting from people just initially with those people when I sang that song. But when I started to post the poetry on some of these support groups and online, I started to get messages from all over the world saying the exact same thing with everything that was writing, that it was making them feel like they were less alone. And they were using my words as a way to communicate to their friends and family how they were feeling when they couldn't find the words themselves. And when I heard people doing this, using my words in that kind of self-help way, and the impact it was having, it just made me feel less afraid with losing my sight and made me feel that I could really do something to help people. And that is just the most... I don't need to explain that to anyone at AFB because you do that on a day-to-day basis.
Melody Goodspeed: Yeah, but we do have a lot of people online that are watching now that do. And I was wondering, maybe we could pause here. If you wanted to go ahead and do one of your poetry readings that would address that loss, because it is really hard for people to express themselves. I know I had a hard time expressing, but I also know that it's also difficult for people that have family members that are going through it. Do you have something maybe you can read for us now?
Dave Steele Of course. So this is one from the first book, which we'll talk about the books in a little while. But this poem, I think it's the first poem in the book, and I chose it for a reason. It's had quite an impact on a lot of people. It talks about a lot of the misconceptions that are out there about, we've all heard the, "You don't look blind," kind of thing, and the way people are perceived. And often what I found and certainly, I've had a lot of people agree with me, that it's quite often not the physical attributes and effects of a particular low vision condition that are the hardest things for people like us to come to terms with. Often, it's the misconceptions that are out there that are the most difficult things to overcome.
It's those people thinking you have to look a certain way. And so this one kind of tackles that. I hope people out there can relate to it. It's quite a short poem, but it's called My Blind Secret, and it goes like this.
I have a secret from the world that most of you don't know. Won't hear it in the way I talk, and eyes, no clue will show. If you listen to my story, something new to learn, you'll find. For though I'm looking straight at you, I'm legally blind. It's not a simple yes or no. I'm more a shade of gray. I rarely venture out alone, as things get in the way. For what I see affects my days in much more ways than one, and this for some continues until little left has gone. But still, this pain's invisible to those that pass us by. There's some afraid to hold a cane because of questions, why? Accused of making up our claim and made to feel a fraud, feel drained of all my confidence, feel trapped behind this door. Now, hardest thing to come to terms that makes my days feel long. It holds us back, knowledge they lack, for all you've got it wrong. To hear that judge and jury, even though their facts aren't straight. Feel misdirected fury, which opinions now could wait. To take the time to get to know the visions that we share. Come join me in my tunnel, hold my hand, show you care.Thank you.
Melody Goodspeed: That was beautiful. Thank you so much. I get [inaudible 00:14:16] but I mean it is, you're capturing the words and expressions that is truly how people feel when they lose their vision. And I hear that, too, from others as well. When you read these and you're with groups, what kind of feedback do you get and how does it make you feel moving forward now with the acceptance part?
Dave Steele Do you know what? It's something that I never take for granted. When we first met, I was doing my first USA book tour. And with Bari Azman from the Low Vision Specialist in Maryland, Virginia, who's watching right now. And the experience that we have traveling around at these events together, it was really overwhelming. I remember doing the first one in Pennsylvania. Pennsylvania? Yeah. I think so. Yeah. And I remember being quite nervous about it because it was the first one of the tour, and just hoping that we got off to a good start. And at the end, I had guys, elderly men who were in the audience hugging me, and women sort of saying how the connection that they've made with these words, how it made them feel, and how the same kind of thing that I've said before, about feeling like they're less alone, and feeling understood and it's a unique thing.
Poetry and music has this ability to kind of heal the heart and touch the soul like few things in life. We all have a particular song from years ago that's maybe gotten us through a teenage heartbreak or something like that. And we all have these special songs, and poetry has that ability to reach out and make people listen and understand. So it kind of has two sides with everything that I do and write. It has the side where it helps people who are affected by low vision and blindness feel like they're less alone and they can use my words to help them explain to other people how they're feeling. But then also for people who aren't affected by low vision, when I'm often reading in front of audiences, I'll see people close their eyes and really put themselves in our shoes.
And it's a very powerful tool. It's different to someone just kind of stood there. I'll read you a quick poem now. There's a story behind this poem, and I read this everywhere I go. And I actually read this to Adrianna [AFB’s Community Engagement Director] who asked me to do the Helen Keller Awards. And it was this poem that I think really clicked with her. And the reason why I wrote this poem was I got an award here in the UK a couple of years ago. And when they asked me to write the speech, like an acceptance speech, I kind of drew a blank. I didn't know what I was going to say. Total writer's block. Now, I've written over 700 poems in five years, all about low vision. I've never had writer's block. I've never written a poem that's taken me longer than 20 minutes, but when I went to write this, I couldn't for the life of me write a speech.
So I decided to write it as a poem and basically tell my story of why I'm here and why I do what I do. So I'll just quickly read it for you now, and hopefully the listeners out there will understand a little bit more from what I've already said.
All the tears that I've shed, and these scars upon my wrist, have made me who I am today, prepared me now for this. I wouldn't be so strong if I had never failed before. I'd still be isolated, scared to step outside my door. I'm not saying that I'm over this. Those bad eye days still come. For even now whilst reading this, I'm blinded by the sun. I'm anxious and my chest is tight. I feel like giving in, but deep inside my heart, I know, I'll never let this win. I promised just six years ago when blindness certified, through poetry, I'd share my tales to others far and wide, so no one ever needs to feel alone with losing sight. Explain their thoughts to loved ones through these verses that I write, but never did I imagine that my words could do so much. They've healed the hearts of strangers. Opened doors with slightest touch. I'll be a friend, my pride will mend, my purpose clear to see. Three books will be my legacy, my Stand By Me RP. I know that soon these faces I look upon today will disappear, but I won't fear. These memories will stay. My wife, my sons, my daughter, in here will never age. My love for them is printed in each poem, verse, and page. When last has gone, I'll carry on to make my family proud. To be a voice for others, to help them lift this hazy shroud. Inspire them to grab a cane, and step outside their homes. Four words, each poem's message saying, you are not alone.
Melody Goodspeed: That was absolutely beautiful, Dave. Well, that was absolutely beautiful. It's just a perfect way to segue into our Q&A section in a minute. But what I want to say is I also love what you're doing with your advocacy, because with this work that you're doing through poetry, it's just bringing such inclusion and showing that people don't need to be afraid of blindness. And I believe that comes in both ends. I mean, and we could go on with this for hours, but I just wanted to thank you for sharing that and thank you for being here with us today. And I know that you have just opened up so many hearts today, and will for your whole life. And I can't thank you enough for being here.
Dave Steele I think there's great strength in being able to talk about your weaknesses. And I think that's really, really important. We all have... Not just those affected by low vision, but everyone in life has bad days and unhappy days, and that's what life is. And I think if we can all help each other and especially through this kind of format, it's a great way. But there's nothing to be afraid of.