The Blind Poet, Dave Steele
Listen in as we chat with Dave Steele about his life, poetry, and vision loss.
Hadley
The Blind Poet, Dave Steele
Presented by Ricky Enger
Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger, inviting you to sit back, relax, and enjoy a conversation with the experts, in this episode, blind poet Dave Steele joins us to share his story.
Welcome to the show, Dave.
Dave Steele: Thank you so much for having me, Ricky.
Ricky Enger: We are delighted to have you. Here at Hadley, we have actually followed your work for quite a while and really, really love it. Recently we shared one of your poems on our Facebook page and turns out a lot of other people resonate with it as well, so this is perfect to have you on to chat with us, to share your story with our audience, and maybe we can get a little poem from you a bit later in the show. So glad to have you.
Dave Steele: Yeah, absolutely. I really, really appreciate you sharing the poem.
Ricky Enger: I guess before we kind of talk about what you do now, which is you write a lot of awesome poetry and share it with people, this all started at some point and I think it came about because of vision loss that you experienced. Maybe we'll just start with your sharing a bit about what that was like when it happened, what the process was initially for you.
Dave Steele: Sure. So, I have a condition I'm sure quite a lot of your listeners will be familiar with called retinitis pigmentosa or RP for short. RP, for those that don't know, is a hereditary condition in most cases. It is actually a name for a collection of different eye diseases that kind of deteriorate in a very, very similar way. There's no treatment or cure for RP. The way you tend to lose your sight is it starts off generally with night blindness, so struggling from light to dark places and then you start to lose your peripheral vision. Maybe you've heard the phrase tunnel vision, which is similar to RP. It's like a tunnel closing inwards, then you start to lose your central, and often it results in complete blindness.
The way I first heard about it was when I was probably about seven years old, my sister, one of my sisters was the first one to be diagnosed with it in the early eighties. Back then they didn't really know a lot about the condition, but I remember going to my local eye hospital with the rest of the family to be tested, having these drops put in my eyes, which made my vision go blurry, which I now know to be dilating drops because I have them at every single checkup I go to. But other than kind of that appointment when I was seven years old, after that, I didn't really hear any talk of RP. It was just kind of kept from me. There were maybe conversations that went on in the background, but I was too young to know about it. Then I just got on with my life.
Looking back now, I probably have the early onset of it from my early twenties, that struggling from light to dark places but it was a very, very slight adjustment and one that I didn't actually at the time put down to RP. I just adjusted, took a couple of seconds and got on with things.
Then, the way it all changed for me was when I was officially diagnosed around about nine years ago. I was in my late thirties. I used to go and get my eyes checked every couple of years just to make sure I was good for driving and things like that. When I went for a routine eye exam, the optician looked into the back of my eyes and immediately there was this pause and he just said, "Oh, there's been a bit of a change since the last time we saw you. We need to run a couple of more tests." They asked me to do a peripheral visual field test, which is for those that don't know, they put me on this machine and test in each eye. I had to hold this button and every time a light went off in my peripheral vision, I had to click the button to signify that I'd seen it.
The test started and I just sat there holding the button and not clicking it. This realization of what was happening to me all of a sudden swept over me and my wife, Amy, who was my fiancé at the time. I just proposed to her and we were just saving to get married. We had our son who was about seven, eight months old at the time. He sat outside with Amy in his car seat in the waiting room and I had to walk out of the waiting room being told that I had to stop driving straight away and I was being referred to a retinal specialist. Literally about two weeks later I was declared severely sight impaired or legally blind.
Ricky Enger: Wow. Just to go from not realizing because it was happening so gradually to suddenly realizing that, I guess, quite a bit had changed and you were in a completely different place than you were just walking into that appointment. I know one thing that we hear a lot, it's really common regardless of what the reason is for your vision loss, there are always just so many emotions that surround the whole process of vision loss and adjusting to it. I think people process that in a lot of different ways.
How did you stumble on or happen upon poetry as a way to channel some of these emotions that you were going through?
Dave Steele: Well, the way it happened, you couldn't actually write it, it's so strange, my story and the way it's developed. From the moment of that appointment, it was almost like a veil came down. You said obviously, you hear a lot of similar stories from people with regards to how they are when they're diagnosed and a thing like RP is such a very slow and gradual loss that happened over many years, probably from my early twenties as I said. The strange thing is that the brain does this really unusual thing. When you walk into a room, and this is for fully sighted people as well as visually impaired people, when you walk into a room, your brain subconsciously scans what's in the room and often it fills in the blanks for what your eyes can't see. Sometimes people who are visually impaired feel like they can see more than they actually can until they're actually physically tested under these conditions. From that moment of being tested, it was almost like all of a sudden the veil came down and I started to realize that I couldn't see as much as I thought I could and I was probably in denial a little bit.
But what happened after that appointment was a really tough eight to nine months. I was working in car sales at the time and I was also working as a singer. Everything that I did as far as employment involved me driving around and getting myself around independently. The minute I was told I wasn't able to drive anymore, my employer let me go so I lost my job. I couldn't do the gigs that I was doing singing anymore. I couldn't drive up to Scotland where my daughter from a previous relationship was living and pick her up, so I wasn't able to see her for a little while.
We applied for support through the government and the benefits system, but there was a nine month process, procedure, waiting list to get and receive help and a payment. We lost our house. We had to feed our kids on food banks and food parcels for a little while. I was struggling not just with depression and anxiety because of the sight that I was losing because stress adds to that as well, but also for the financial pressure it was putting on my family.
It was when I was at my lowest that I was invited to a support group after speaking to some people online. When I said I'd go to the support group, I was really anxious about going to it because it was going to be my first time being around other visually impaired people, people with canes and guide dogs, it was like a glimpse into the future. But when the organizers of the support group heard that I previously worked as a singer, they said to me, "Would you come and sing some songs and be the entertainment for the support group?" That immediately took away that anxiety for me because that was my comfort zone being in that role.
Yeah, the poetry, the way it came about was literally the night before going to the support group, I was in bed going over ideas of songs to sing and I just thought it'd be really cool if I could take a song that everyone knows but change the words. I chose Stand By Me, by Ben E. King because the opening line of, "When the night has come and the land is dark and the moon is the only light we'll see," that was kind of the night blindness aspect of RP for me. I rewrote the song, changed the lyrics up, called it "Stand By Me RP," and performed it the following day. Immediately when I sang that song, people were coming up to me really emotional saying that the words that I'd written were able to describe how they were feeling about their experiences with low vision and blindness and it was really helping them. That was the first time since my diagnosis I felt like, "Oh, okay, this is something that I could do now. This is something that I could have a place in the world for and be of value."
Because from that moment of diagnosis, I went through that whole thing of loss of confidence, loss of independence, loss of pride, loss of purpose, but hearing the response to that song from people triggered something in me and I got my purpose back. That was where I started to write every day, sharing the good and bad experience of everything that we were going through because music and poetry, it's the same thing to me. It's song lyrics and it has that ability to impact people and make people feel something more than just speaking about it could ever do.
Ricky Enger: What an amazing story. It sounds like you honestly did stumble into it. It was just a thing that by happenstance you were asked to do, something that was within your comfort zone and then you found that what you were doing wasn't just therapy for yourself. I think a lot of people will process things differently, again, where they say, "I have some sort of self-care that I need to do, but this is mine. I'm not really ready to share that with other people." For you, it sounds like you immediately went from having discovered this thing, to it's your purpose and you saw that immediate feedback that this isn't just helping me, it's helping other people. I love it.
Dave Steele: I think with my past, previous to sight loss, I spent a lot of years, my formative years, my late teens, early twenties where I was alone a lot, didn't have a home, I ended up homeless quite a few times. There were times I was really struggling with my mental health, there were suicide attempts. I went through a really rough time and actually those things made me stronger. The way I look at it now is the things that we go through in our past give us the armor and the tools to face the things we get to face going forward. That's why now, fast forward, I have this ability, when I have a bad day, we all have our bad days still, whether you're affected by low vision or blindness or whatever, but when I have what I call my bad eye days and I'm really struggling with anxiety or making an adjustment, I'm now in a place where I can go, "Okay, I can take this negative thing that I'm feeling, I can put it into a piece of poetry, and it will help someone." That helps me and it's a really cool thing to do.
Ricky Enger: Yeah, absolutely. I know that vision loss is never, you go through something and then it's done. You're at the end of it, you've processed. It can be you have a day where you feel on top of the world and then you have one of those days where it just feels like everything is too much. Drawing on that strength of having gone through tough times before I can do this again, is that the thing that you think has really helped you on this journey? Is there anything else that you could point to where on your bad days you say, "This particular thing will help me get through it and I know it's going to be better tomorrow or the next day"?
Dave Steele: Yeah, 100%. Obviously there's drawing on past experiences. The way I look at things now is that it’s never at first the way it seems it would be. We get anxious about going to busy places, places we feel uncomfortable, taking that first step outside of our doors. As a parent, we tell our children the same thing. When they're trying something new for the first time, that actually once you do something, it's never as scary as you build it up in your mind, and that's true about these things that we experience in disability and sight loss and whatever else we go through. Knowing that it's never as scary.
Also, most of the times we really struggle it's actually down to us being frustrated and being hard on ourselves. I tell people, "Just remember that these things that you're feeling are actually perfectly normal and perfectly natural. Don't be too hard on yourself. Don't beat yourself up. Take your time to breathe, grieve, do whatever you need to do, and always know that anything in life, it'll pass. The bad days, they always pass."
Ricky Enger: Yeah, that's fantastic advice. I think we could all be a little kinder to ourselves regardless of what it is that we're going through and just be willing to try it, whatever it is. It's not going to be as scary as ... The imagination is a wonderful thing, but it could be a terrible thing at times as well because you build up so many things in your mind and turns out it was nothing like that.
We have talked a lot about your poetry, but we haven't actually gotten a sample of it just yet. I think listeners are on the edge of their seats hoping that we'll do that. I'm wondering if you would be willing to just share something that you've written with us?
Dave Steele: Absolutely. Of course, I will. This poem is called "Blind Perceptions," and when I originally wrote it a couple of years ago, one of my friends in America said to me that it actually really describes quite a lot of aspects of living with low vision and blindness. I'm sure a lot of your listeners will be able to relate to this. It goes like this.
I know there’s strength inside of you
though all you feel is numb
Don’t be afraid as eye sight fades for what is still to come
You will adjust in these words trust we share these tunnelled eyes
A mix of strength with anxiousness the same in me applies
My shins are full of bruises
and my confidence misplaced
At time self isolated
felt the world too much to face
So I’m here to remind you
all the times we fail don’t matter
There’s lots of misconceptions still let’s remind them of the latter
It’s not that complicated
change how blindness is defined
Let’s educate
articulate
the many ways we’re blind
It’s never all or nothing
many shades and different views
Yet there’s a stereotype they keep on printing in the news
No wonder some of us have fears when out in crowded place
They see the cane
but can’t explain why we look them in the face
There’s some of us who stay at home convinced of the excuse
that because we don’t look blind enough
there’s a need to be recluse
Don’t waste your life on people whose opinions are way off
Just swipe your cane with courage
hold your head with pride aloft
So never doubt what we’re about despite what some believe
Come join me on my mission
change the way we are perceived
Won’t let the haze that fills my eyes consume the rest of me
There’s more to life
than edge of knife
despite what I can’t see
Try not to care as people stare
with looks of vague suspicion
But why should I explain to them the terms of my condition
Though it’s much simpler to stay home
won’t waste another day
Their pity’s just an obstacle that’s getting in my way
Though I am blind won’t be confined by others misconceptions
This poetry that spills from me
will change their blind perceptions
Though anxious chest and days depressed
have far from disappeared
I’ve learned to breathe while I still grieve
control these things I’ve feared
My kids look on
not on what’s gone
but all each day I teach
For if tomorrow their eyes pay
life’s dreams are still in reach
So I’ll not cry as vision dies
won’t focus on the blur
No point in holding on to how
those days and eyes once were
Ricky Enger: Bravo. Love it. Thank you so much. Something tells me there's plenty more where that came from. For people who want to find out what you're doing, what's going on in your world, and of course get access to the poems that you choose to share, where can they do that?
Dave Steele: I'm in a really fortunate position now where literally if you type in "The Blind Poet" onto Google, all this stuff will come up, The Blind Poet, Dave Steele on all social media, Instagram, Facebook, and the likes of. Also, my website is theblindpoet.net. But with regards to literature, I've released four books now and counting, more to come. Three, which were named after that song, stand By Me RP volumes one, two, and three, which are just collections of poetry going right from the start of my diagnosis all the way through. The latest one that came out just last year was my first children's book, which is called Austin's Amazing Adventures, which is a book based on my son Austin. In the book, he's a young visually impaired boy with his best friend his guide dog and it's about helping children with disabilities be better understood and breaking down those needless social barriers and it's short poetic stories. Yeah, so really, really proud of all those. But yeah, if check me out and send me a message anytime.
Ricky Enger: Fantastic. We'll have all that information in the show notes so you all can check it out as well.
Dave, I so appreciate you stopping by, sharing your story, your poetry with us. It is so much appreciated and I've really enjoyed it. Thank you.
Dave Steele: Oh, my absolute pleasure. Thanks for having me.
Ricky Enger: Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at podcast@hadley.edu. That's P-O-D-C-A-S-T@hadley.edu or leave us a message at 847-784-2870. Thanks for listening.
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Episode 33
In this episode, we chat with low vision optometrist Dr. Mark Wilkinson from the University of Iowa. Dr. Wilkinson answers common questions and shares his advice for getting the most out of low vision optometry appointments.
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Episode 32
Jan and Elgie Dow share how vision loss has changed their relationship and the advice they have for other couples.
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Episode 31
Join Hadley advisor Eddie Becerra as he shares about losing his sight from diabetic retinopathy, and how he gained a new perspective on life.
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Episode 30
Classically trained chef Regina Mitchell shares how vision loss shaped her life. Regina worked her way back into the kitchen and is now helping others cook with confidence, no matter their vision.
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Episode 29
In this episode we sit down with the director of Well Connected, an organization that offers free, call-in groups for adults over 60 on a wide variety of interest areas: games, music, meditation and more.
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Episode 28
Support groups can be a great way to connect with others who "get it." Listen in as as low vision support group leaders Lynndah Lahey and Judy Davis describe how their groups are run and what their members get out of them.
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Episode 27
World-renowned artist John Bramblitt describes how vision loss has shaped his painting and his life.
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Episode 26
In this episode, we chat with Dr. Tim Murray of the American Society of Retina Specialists. Dr. Murray treats eye diseases such as macular degeneration and diabetic retinopathy. He answers common questions and shares his insights into the future of treatments.
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Episode 25
In this episode, we sit down with Dr. Jullia Rosdahl, a glaucoma specialist from the Duke Eye Center, and ask her some of the many questions we’ve heard about glaucoma, its risk factors, and how to treat the disease.
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Episode 24
Hadley learning expert Jessica Smith shares her experience raising a puppy that may eventually become a guide dog. She covers what she’s learned and things to consider if you’d like to volunteer to help out a guide dog school.
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Episode 23
October 15 is White Cane Safety Day, a day to recognize this important tool that empowers people with visual impairment to travel safely and independently. It also brings attention to the general public to be mindful of visually impaired neighbors, giving them additional consideration and right-of-way when needed. We sat down with Kellee Sanchez, an orientation and mobility specialist, to talk about the history of White Cane Safety Day, and how a white cane can help those with vision loss.
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Episode 22
Be My Eyes is a free smartphone app that connects visually impaired users with sighted volunteers for help with visual tasks. We sat down with Will Butler from Be My Eyes to hear how the app started, tips for using it, and exciting new features that provide specialized assistance, including with Hadley.
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Episode 21
Tracy Simon from Eye2Eye peer support program shares her story of vision loss, how her program works, and the benefits of connecting with and supporting each other.
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Episode 20
Ophthalmologist Dr. Lori Provencher chats with us about how the coronavirus pandemic has changed doctor's visits. She shares tips for staying safe, questions to ask, and what to expect before, during and after your next office visit.
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Episode 19
Mindfulness expert Tiffany Guske returns to the podcast to share tips and insights on how to cope with life's challenges, such as vision loss or an illness, building resilience and focusing on self-compassion instead of judgment.
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Episode 18
Author of "When You Can't Believe Your Eyes," Hannah Fairbairn, chats with us about how to communicate in everyday situations when you can't rely on visual cues. Hear Hannah's own story about losing vision, her practical tips on adjusting to vision loss, and advice she has on regaining confidence in social situations.
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Episode 17
In this episode, we continue the conversation on living during the COVID-19 pandemic with a visual impairment. Listen in as we share some experiences, tips, and strategies for coping during these difficult times.
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Episode 16
The COVID-19 crisis has brought a wave of change and uncertainty to our everyday lives. Listen in as we share personal experiences, resources and some helpful tips...all from a blind or low vision perspective.
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Episode 15
Assistive technology experts Ricky Enger and Steve Kelley review BlindShell, a mobile phone built for those with visual impairment. They discuss the basic features, how it differs from a traditional smartphone, and how to decide if it's right for you.
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Episode 14
This week we sit down with Dan Roberts, author of "The First Year-Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed" and founder of MDSupport website and support group. Hear Dan's own story about being diagnosed with macular degeneration and what prompted him to reach out to others facing similar circumstances.
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Episode 13
Listen in as we explore the basics of using hand tools with a visual impairment. Gil Johnson, a visually impaired home repair expert, shares tips on everything from measuring, to leveling to hammering.
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Episode 11
Elections are right around the corner. So we gathered a panel to talk about options for voting no matter your level of vision. Listen in as we explore everything you need to know, from registering to vote to the many ways you can cast your ballot.
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Episode 12
Ricky sits down with Android Accessibility Product Manager Brian Kemler to discuss what is available on Android phones for those with visual impairment. From adjusting font size and color, or opting to listen with TalkBack instead, the commitment to making these powerful tools more useful to a wider audience is clear.
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Episode 1
In this episode, we chat with Gil Johnson, an experienced home repair and woodworking enthusiast about things to consider when undertaking home repair with blindness or low vision.
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Episode 2
Hadley's Debbie Good sits down to continue a conversation with author and visually impaired world traveler Dr. Wendy David. Together they explore a wide variety of helpful hints covering train, plane, and cruise travel as well as practical information on traveling internationally and navigating hotels.
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Episode 3
In this episode, Ricky Enger chats with Joe Strechay, associate producer on the Apple TV+ series SEE. The show takes place in a future where, after a viral apocalypse, all humans are blind. Joe takes us behind the scenes of the show and his work to help build an inclusive set for the cast and crew, including those with low to no vision. From casting to costumes, scripting to scenery, hear how Joe helped create a science fiction world that strives to be authentic to life with vision loss.
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Episode 4
Hadley's Debbie Good sits down with travel author Dr. Wendy David in this latest episode. In part one of this two-part interview, Debbie and Wendy discuss tips for traveling with confidence as a blind or low vision person, advice on picking destinations, considerations for traveling alone and in a group, and more!
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Episode 5
Ricky Enger is joined by Hadley's Debbie Worman and mindfulness expert Tiffany Guske in this latest episode. Debbie and Tiffany talk about what mindfulness is and the specific benefits that mindfulness can offer for those living with vision loss. Tiffany then walks listeners through a short mindfulness exercise.
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Episode 6
In this episode, Ricky Enger speaks with New York Times columnist Frank Bruni, who shares the story of his sudden vision loss from NAION. Bruni speaks candidly on his adjustment to the change, maintaining a realistic attitude towards his vision loss, and the failure of medical professionals to provide resources after diagnosis.
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Episode 7
Listen in as we share practical tips on how to keep your handwriting readable. This resource-packed episode includes many useful techniques and solutions to common handwriting challenges. Hadley Learning Expert Jennifer Ottowitz chats with Sue Dalton, Certified Vision Rehabilitation Therapist.
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Episode 8
In this episode, Hadley's Steve Kelley speaks with Kendra Farrow, from the National Research and Training Center on Blindness and Low Vision, located at Mississippi State. The episode serves as a guide for those new to vision rehabilitation, including determining who is eligible for services, key differences between the medical and social services models, and how to locate services in each state.
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Episode 9
In this episode, Ricky Enger chats with Microsoft's Jeremy Curry, a Senior Program Manager with the Windows Accessibility team. New vision accessibility features are now available in Windows 10 for low vision and screen reader users.
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Episode 10
In the inaugural episode of Hadley Presents, Ricky Enger and Jonathan Mosen of Aira chat about the ways in which a visual interpreter service, such as Aira, can be used to gain valuable visual information and enhance travel and leisure activities for blind and low vision users.