(bright music)
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.
Thank you so much for having me, Ricky.
We are delighted to have you.
Here at Hadley, we have actually followed your work
for quite a while and really, really love it.
And 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 just 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 yeah, so glad to have you.
Yeah, absolutely, and I really, really appreciate
you sharing the poem.
So I guess before we kind of talk about
what you do now,
which is you do 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.
And so maybe we'll just start with your sharing a bit about
what that was like when it happened,
sort of what the process was initially for you.
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.
And 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.
So, 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,
one of my sisters was the first one
to be diagnosed with it in the early 80s.
And 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
'cause 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 was maybe conversations
that went on in the background,
but I was kind of too young to know about it.
And then I just kind of got on with my life.
Looking back now, I probably had the early onset of it
from my early 20s
that kind of struggling from light to dark places.
But it was a very, very slight adjustment
and one that I didn't actually at the time
kind of put down to RP.
I just kind of adjusted, took a couple of seconds
and kind of got on with things.
And then the way it all kind of changed
for me when I was officially diagnosed
was around about nine years ago.
I was in my late 30s.
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 kind of pause
and he just kind of 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."
So they went and asked me
to do a peripheral visual field test,
which, for those that don't know,
they kind of put me on this machine, testing 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 kind of signify that I'd seen it.
But the test started
and I was just sat there holding the button
and not clicking it.
And this kind of realization of what was happening to me
all of a sudden kind of swept over me.
My wife, Amy, who was now my fiance 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 was 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.
I was being referred to a retinal specialist.
And literally about two weeks later
I was declared severely sight impaired
or as it is there legally blind.
Wow, and 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 in to 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.
And I think people process that
in a lot of different ways.
How did you kind of stumble on
or happen upon poetry
as a way to channel some of these emotions
that you were going through?
Well, the way it kind of happened,
I mean, you couldn't actually write it is so strange,
kind of 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 20s as I said.
And 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.
So sometimes people who are visually impaired
feel like they can see more than they actually can
until they're actually physically tested
under these kind of conditions.
And from that moment of being tested,
it was 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 a little bit.
But what happened after that appointment
was a really kind of tough eight or nine months.
I was working in car sales at the time
and I was also working as a singer.
And everything that I did as far as employment
involved me driving around
and getting myself around independently.
And 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 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 kind of get and receive help and a payment.
So we lost our house.
We had to feed our kids on food banks
and food parcels for a little while.
And I was struggling not just with depression and anxiety
'cause of the sight that I was losing
'cause stress adds to that as well.
But also for the financial pressure
it was putting on my family.
And it was when I was at my lowest,
that I was invited to a support group
after speaking to some people online.
And when I kind of said I'd go to the support group,
I was really anxious about going to it
because it was gonna 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?"
And that kind of immediately took away that anxiety for me
'cause that was my comfort zone being in that kind of role.
So 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.
So I chose "Stand By Me," by Benny King
'cause 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 kinda like the night blindness aspect of RP for me.
So I rewrote the song, changed the lyrics up,
called it "Stand By Me RP,"
performed it the following day.
And immediately when I sang that song
people were coming up to me really emotional
saying that the words that I'd written
was able to describe how they were feeling
about their experiences with low vision and blindness.
And it was really helping them.
And that kind of 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
kind of triggered something in me
and I got my purpose back.
And that was where I started to write every day,
sharing the good and bad experience of it,
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 kind of speaking about it, could ever do.
What an amazing story.
And it sounds like you honestly did kind of 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.
'Cause 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."
And for you, it sounds like you immediately went
from having discovered this thing to it's your purpose
and you kind of saw that just immediate feedback
of this isn't just helping me,
it's helping other people.
I love it.
I think with my past, previous to sight loss,
I spent a lot of years in my kind of formative years,
my late teens, early 20s
where I was alone a lot, didn't have a home.
I ended up homeless quite a few times.
There was times
I was really struggling with my mental health.
There was suicide attempts.
I went through a really rough time
and actually those things made me stronger.
And 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.
So, that's why now kind of fast forward,
I have this kind of ability to,
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 am 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."
And that helps me.
It's a really cool thing to do.
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.
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.
And so drawing on that strength of,
I've 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 gonna be better tomorrow or the next day?"
Yeah, 100%, obviously, there's drawing
on past experiences,
the way I look at things now
is as it ever first seems it would be.
So, we get anxious about going to busy places,
places we feel uncomfortable,
taking that first step outside of our doors.
And 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.
So, knowing that it's never as scary.
And also, most of the times we really struggle actually.
It's down to us being frustrated
and being hard on ourselves.
And actually 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 like anything in life, it'll pass.
The bad days they always pass."
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.
Yeah, being willing to try it, whatever it is,
it's not gonna be as scary.
The imagination is a wonderful thing,
but it could be a terrible thing at times as well
'cause you build up so many things in your mind
and turns out it was nothing like that.
So we have talked a lot about your poetry,
but we haven't actually gotten a sample of it just yet.
And I think listeners are on the edge of their seats
hoping that we'll do that.
So I'm wondering if you would be willing
to just share something that you've written with us.
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 in America said to me
that actually, it really describes
quite a lot of aspects
of living with low vision and blindness.
And I'm sure a lot of your listeners
will be able to relate to this.
And 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 tunneled 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
and change the way we are perceived
I 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
And 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 fear
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.
There you go.
Bravo, love it, thank you so much.
And something tells me there's plenty more
where that came from.
So 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?
So I'm in really fortunate position now
where literally if you type in "The Blind Poet" onto Google,
all this stuff will come up.
But 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.
And 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.
So really, really proud of all those.
Check me out and send me a message anytime.
Fantastic, and we'll have all that information
in the show notes
so you all can check it out as well.
Dave, I so appreciate your stopping by sharing your story,
your poetry with us.
It is so much appreciated
and I've really enjoyed it, thank you.
Oh my absolute pleasure.
Thanks for having me.
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