WEBVTT

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(bright music)

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Welcome to Hadley Presents.

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I'm your host, Ricky Enger,

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inviting you to sit back, relax,

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and enjoy a conversation with the experts.

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In this episode,

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blind poet Dave Steele joins us to share his story.

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Welcome to the show Dave.

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Thank you so much for having me, Ricky.

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We are delighted to have you.

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Here at Hadley, we have actually followed your work

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for quite a while and really, really love it.

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And recently we shared one of your poems

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on our Facebook page

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and turns out a lot of other people

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resonate with it as well.

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So this is perfect just to have you on to chat with us,

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to share your story with our audience

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and maybe we can get a little poem from you

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a bit later in the show.

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So yeah, so glad to have you.

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Yeah, absolutely, and I really, really appreciate

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you sharing the poem.

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So I guess before we kind of talk about

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what you do now,

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which is you do write a lot of awesome poetry

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and share it with people.

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This all started at some point

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and I think it came about

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because of vision loss that you experienced.

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And so maybe we'll just start with your sharing a bit about

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what that was like when it happened,

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sort of what the process was initially for you.

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Sure, so I have a condition

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I'm sure quite a lot of your listeners will be familiar with

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called retinitis pigmentosa or RP for short.

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RP for those that don't know,

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is a hereditary condition in most cases.

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It is actually a name

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for a collection of different eye diseases

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that kind of deteriorate in a very, very similar way.

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There's no treatment or cure for RP.

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And the way you tend to lose your sight is it starts off

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generally with night blindness.

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So struggling from light to dark places

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and then you start to lose your peripheral vision.

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So, maybe you've heard the phrase tunnel vision,

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which is similar to RP.

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It's like a tunnel closing inwards.

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Then you start to lose your central

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and often it results in complete blindness.

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The way I first heard about it

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was when I was probably about seven years old,

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one of my sisters was the first one

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to be diagnosed with it in the early 80s.

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And back then they didn't really know

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a lot about the condition.

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But I remember going to my local eye hospital

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with the rest of the family to be tested,

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having these drops put in my eyes,

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which made my vision go blurry,

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which I now know to be dilating drops

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'cause I have them at every single checkup I go to.

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But other than kind of that appointment

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when I was seven years old

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after that I didn't really hear any talk of RP.

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It was just kind of kept from me.

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There was maybe conversations

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that went on in the background,

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but I was kind of too young to know about it.

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And then I just kind of got on with my life.

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Looking back now, I probably had the early onset of it

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from my early 20s

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that kind of struggling from light to dark places.

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But it was a very, very slight adjustment

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and one that I didn't actually at the time

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kind of put down to RP.

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I just kind of adjusted, took a couple of seconds

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and kind of got on with things.

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And then the way it all kind of changed

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for me when I was officially diagnosed

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was around about nine years ago.

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I was in my late 30s.

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I used to go and get my eyes checked every couple of years

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just to make sure I was good for driving

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and things like that.

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When I went for a routine eye exam,

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the optician looked into the back of my eyes

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and immediately there was this kind of pause

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and he just kind of said,

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"Oh, there's been a bit of a change

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since the last time we saw you.

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We need to run a couple of more tests."

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So they went and asked me

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to do a peripheral visual field test,

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which, for those that don't know,

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they kind of put me on this machine, testing each eye.

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I had to hold this button

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and every time a light went off in my peripheral vision,

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I had to click the button

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to kind of signify that I'd seen it.

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But the test started

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and I was just sat there holding the button

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and not clicking it.

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And this kind of realization of what was happening to me

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all of a sudden kind of swept over me.

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My wife, Amy, who was now my fiance at the time,

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I just proposed to her

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and we were just saving to get married.

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We had our son who was about seven,

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eight months old at the time.

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He was sat outside with Amy in his car seat

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in the waiting room.

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And I had to walk out of the waiting room

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being told that I had to stop driving straight away.

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I was being referred to a retinal specialist.

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And literally about two weeks later

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I was declared severely sight impaired

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or as it is there legally blind.

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Wow, and just to go from not realizing

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because it was happening so gradually

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to suddenly realizing that I guess quite a bit had changed

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and you were in a completely different place

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than you were just walking in to that appointment.

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I know one thing that we hear a lot,

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it's really common

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regardless of what the reason is for your vision loss,

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there are always just so many emotions

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that surround the whole process of vision loss

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and adjusting to it.

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And I think people process that

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in a lot of different ways.

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How did you kind of stumble on

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or happen upon poetry

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as a way to channel some of these emotions

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that you were going through?

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Well, the way it kind of happened,

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I mean, you couldn't actually write it is so strange,

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kind of my story and the way it's developed

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from the moment of that appointment,

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it was almost like a veil came down.

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You said, obviously, you hear a lot of similar stories

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from people with regards to how they are

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when they're diagnosed.

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And a thing like RP is such a very slow and gradual loss

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that happened over many years,

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probably from my early 20s as I said.

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And the strange thing is that the brain

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does this really unusual thing

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when you walk into a room.

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And this is for fully sighted people

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as well as visually impaired people.

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When you walk into a room,

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your brain subconsciously scans what's in the room

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and often it fills in the blanks

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for what your eyes can't see.

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So sometimes people who are visually impaired

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feel like they can see more than they actually can

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until they're actually physically tested

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under these kind of conditions.

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And from that moment of being tested,

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it was like all of a sudden the veil came down

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and I started to realize that I couldn't see

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as much as I thought I could.

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And I was probably in denial a a little bit.

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But what happened after that appointment

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was a really kind of tough eight or nine months.

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I was working in car sales at the time

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and I was also working as a singer.

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And everything that I did as far as employment

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involved me driving around

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and getting myself around independently.

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And the minute I was told I wasn't able to drive anymore,

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my employer let me go.

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So I lost my job.

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I couldn't do the gigs I was doing singing anymore.

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I couldn't drive up to Scotland

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where my daughter from a previous relationship

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was living and pick her up.

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So I wasn't able to see her for a little while.

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We applied for support through the government

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and the benefits system.

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But there was a nine month process, procedure, waiting list

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to kind of get and receive help and a payment.

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So we lost our house.

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We had to feed our kids on food banks

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and food parcels for a little while.

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And I was struggling not just with depression and anxiety

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'cause of the sight that I was losing

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'cause stress adds to that as well.

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But also for the financial pressure

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it was putting on my family.

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And it was when I was at my lowest,

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that I was invited to a support group

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after speaking to some people online.

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And when I kind of said I'd go to the support group,

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I was really anxious about going to it

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because it was gonna be my first time

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being around other visually impaired people,

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people with canes and guide dogs.

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It was like a glimpse into the future.

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But when the organizers of the support group heard

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that I previously worked as a singer, they said to me,

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"Would you come and sing some songs

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and be the entertainment for the support group?"

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And that kind of immediately took away that anxiety for me

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'cause that was my comfort zone being in that kind of role.

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So yeah, the poetry, the way it came about

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was literally the night before going to the support group,

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I was in bed going over ideas of songs to sing.

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And I just thought it'd be really cool

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if I could take a song that everyone knows

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but change the words.

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So I chose "Stand By Me," by Benny King

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'cause the opening line of when the night has come

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and the land is dark

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and the moon is the only light, we'll see,

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that was kinda like the night blindness aspect of RP for me.

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So I rewrote the song, changed the lyrics up,

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called it "Stand By Me RP,"

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performed it the following day.

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And immediately when I sang that song

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people were coming up to me really emotional

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saying that the words that I'd written

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was able to describe how they were feeling

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about their experiences with low vision and blindness.

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And it was really helping them.

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And that kind of was the first time

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since my diagnosis, I felt like,

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"Oh, okay, this is something that I could do now.

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This is something that I could have a place in the world for

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and be of value."

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Because from that moment of diagnosis,

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I went through that whole thing of loss of confidence,

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loss of independence, loss of pride, loss of purpose.

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But hearing the response to that song from people

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kind of triggered something in me

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and I got my purpose back.

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And that was where I started to write every day,

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sharing the good and bad experience of it,

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of everything that we were going through.

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Because music and poetry, it's the same thing to me.

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It's song lyrics and it has that ability to impact people

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and make people feel something more

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than just kind of speaking about it, could ever do.

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What an amazing story.

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And it sounds like you honestly did kind of stumble into it.

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It was just a thing that by happenstance

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you were asked to do something

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that was within your comfort zone

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and then you found that what you were doing

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wasn't just therapy for yourself.

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'Cause I think a lot of people

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will process things differently again,

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where they say, "I have some sort of self-care

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that I need to do, but this is mine.

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I'm not really ready to share that with other people."

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And for you, it sounds like you immediately went

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from having discovered this thing to it's your purpose

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and you kind of saw that just immediate feedback

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of this isn't just helping me,

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it's helping other people.

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I love it.

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I think with my past, previous to sight loss,

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I spent a lot of years in my kind of formative years,

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my late teens, early 20s

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where I was alone a lot, didn't have a home.

268
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I ended up homeless quite a few times.

269
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There was times

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I was really struggling with my mental health.

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There was suicide attempts.

272
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I went through a really rough time

273
00:11:11.340 --> 00:11:15.120
and actually those things made me stronger.

274
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And the way I look at it now

275
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is the things that we go through in our past

276
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give us the armor and the tools

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to face the things we get to face going forward.

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So, that's why now kind of fast forward,

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I have this kind of ability to,

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00:11:28.650 --> 00:11:30.060
when I have a bad day,

281
00:11:30.060 --> 00:11:31.290
we all have our bad days still,

282
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whether you're affected by low vision

283
00:11:32.610 --> 00:11:34.200
or blindness or whatever.

284
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But when I have what I call my bad eye days

285
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and I'm really struggling with anxiety

286
00:11:37.800 --> 00:11:39.540
or making an adjustment,

287
00:11:39.540 --> 00:11:41.767
I am now in a place where I can go,

288
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"Okay, I can take this negative thing that I'm feeling,

289
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I can put it into a piece of poetry

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00:11:46.830 --> 00:11:48.240
and it will help someone."

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And that helps me.

292
00:11:49.950 --> 00:11:52.890
It's a really cool thing to do.

293
00:11:52.890 --> 00:11:56.206
Yeah, absolutely, I know that vision

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00:11:56.206 --> 00:11:57.390
loss is never,

295
00:11:57.390 --> 00:12:00.120
you go through something and then it's done.

296
00:12:00.120 --> 00:12:02.070
You're at the end of it, you've processed it.

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It can be you have a day where you feel on top of the world

298
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and then you have one of those days

299
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where it just feels like everything is too much.

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And so drawing on that strength of,

301
00:12:16.920 --> 00:12:19.830
I've gone through tough times before

302
00:12:19.830 --> 00:12:21.750
I can do this again.

303
00:12:21.750 --> 00:12:23.550
Is that the thing that you think

304
00:12:23.550 --> 00:12:26.100
has really helped you on this journey?

305
00:12:26.100 --> 00:12:29.940
Is there anything else that you could point to

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00:12:29.940 --> 00:12:33.397
where on your bad days you say,

307
00:12:33.397 --> 00:12:37.050
"This particular thing will help me get through it

308
00:12:37.050 --> 00:12:41.010
and I know it's gonna be better tomorrow or the next day?"

309
00:12:41.010 --> 00:12:43.920
Yeah, 100%, obviously, there's drawing

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00:12:43.920 --> 00:12:45.360
on past experiences,

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00:12:45.360 --> 00:12:46.800
the way I look at things now

312
00:12:46.800 --> 00:12:49.890
is as it ever first seems it would be.

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00:12:49.890 --> 00:12:53.040
So, we get anxious about going to busy places,

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00:12:53.040 --> 00:12:54.270
places we feel uncomfortable,

315
00:12:54.270 --> 00:12:57.090
taking that first step outside of our doors.

316
00:12:57.090 --> 00:12:58.920
And as a parent,

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00:12:58.920 --> 00:13:00.600
we tell our children the same thing

318
00:13:00.600 --> 00:13:02.460
when they're trying something new for the first time.

319
00:13:02.460 --> 00:13:04.890
That actually, once you do something,

320
00:13:04.890 --> 00:13:07.050
it's never as scary as you build it up in your mind.

321
00:13:07.050 --> 00:13:09.060
And that's true about these things

322
00:13:09.060 --> 00:13:12.084
that we experience in disability and sight loss

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00:13:12.084 --> 00:13:14.250
and whatever else we go through.

324
00:13:14.250 --> 00:13:17.790
So, knowing that it's never as scary.

325
00:13:17.790 --> 00:13:21.819
And also, most of the times we really struggle actually.

326
00:13:21.819 --> 00:13:25.390
It's down to us being frustrated

327
00:13:26.376 --> 00:13:27.720
and being hard on ourselves.

328
00:13:27.720 --> 00:13:29.647
And actually I tell people,

329
00:13:29.647 --> 00:13:32.430
"Just remember, that these things that you're feeling

330
00:13:32.430 --> 00:13:34.950
are actually perfectly normal and perfectly natural.

331
00:13:34.950 --> 00:13:36.180
Don't be too hard on yourself.

332
00:13:36.180 --> 00:13:37.330
Don't beat yourself up.

333
00:13:38.639 --> 00:13:40.200
Take your time to breathe, grieve,

334
00:13:40.200 --> 00:13:41.550
do whatever you need to do.

335
00:13:42.511 --> 00:13:45.660
And always know that like anything in life, it'll pass.

336
00:13:45.660 --> 00:13:48.150
The bad days they always pass."

337
00:13:48.150 --> 00:13:50.580
Yeah, that's fantastic advice.

338
00:13:50.580 --> 00:13:54.330
I think we could all be a little kinder to ourselves

339
00:13:54.330 --> 00:13:58.440
regardless of what it is that we're going through.

340
00:13:58.440 --> 00:14:02.190
Yeah, being willing to try it, whatever it is,

341
00:14:02.190 --> 00:14:04.290
it's not gonna be as scary.

342
00:14:04.290 --> 00:14:06.210
The imagination is a wonderful thing,

343
00:14:06.210 --> 00:14:09.120
but it could be a terrible thing at times as well

344
00:14:09.120 --> 00:14:11.160
'cause you build up so many things in your mind

345
00:14:11.160 --> 00:14:13.590
and turns out it was nothing like that.

346
00:14:13.590 --> 00:14:18.590
So we have talked a lot about your poetry,

347
00:14:18.780 --> 00:14:23.760
but we haven't actually gotten a sample of it just yet.

348
00:14:23.760 --> 00:14:27.480
And I think listeners are on the edge of their seats

349
00:14:27.480 --> 00:14:28.890
hoping that we'll do that.

350
00:14:28.890 --> 00:14:31.590
So I'm wondering if you would be willing

351
00:14:31.590 --> 00:14:35.880
to just share something that you've written with us.

352
00:14:35.880 --> 00:14:37.440
Absolutely, of course I will.

353
00:14:37.440 --> 00:14:39.900
This poem is called "Blind Perceptions."

354
00:14:39.900 --> 00:14:43.260
And when I originally wrote it a couple of years ago,

355
00:14:43.260 --> 00:14:45.870
one of my friends in in America said to me

356
00:14:45.870 --> 00:14:47.430
that actually, it really describes

357
00:14:47.430 --> 00:14:48.510
quite a lot of aspects

358
00:14:48.510 --> 00:14:50.070
of living with low vision and blindness.

359
00:14:50.070 --> 00:14:51.750
And I'm sure a lot of your listeners

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00:14:51.750 --> 00:14:52.740
will be able to relate to this.

361
00:14:52.740 --> 00:14:53.840
And it goes like this.

362
00:14:54.840 --> 00:14:57.060
I know there's strength inside of you

363
00:14:57.060 --> 00:14:59.010
though all you feel is numb

364
00:14:59.010 --> 00:15:02.940
Don't be afraid as eye sight fades for what is still to come

365
00:15:02.940 --> 00:15:05.310
You will adjust in these words trust

366
00:15:05.310 --> 00:15:07.290
we share these tunneled eyes

367
00:15:07.290 --> 00:15:11.700
A mix of strength with anxiousness the same in me applies

368
00:15:11.700 --> 00:15:13.440
My shins are full of bruises

369
00:15:13.440 --> 00:15:15.690
and my confidence misplaced

370
00:15:15.690 --> 00:15:17.370
At time self isolated

371
00:15:17.370 --> 00:15:19.830
felt the world too much to face

372
00:15:19.830 --> 00:15:23.850
So I'm here to remind you all the times we fail don't matter

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00:15:23.850 --> 00:15:25.800
There's lots of misconceptions still

374
00:15:25.800 --> 00:15:27.400
let's remind them of the latter

375
00:15:28.440 --> 00:15:31.800
It's not that complicated change how blindness is defined

376
00:15:31.800 --> 00:15:35.790
Let's educate, articulate the many ways we're blind

377
00:15:35.790 --> 00:15:39.390
It's never all or nothing many shades and different views

378
00:15:39.390 --> 00:15:41.130
Yet there's a stereotype

379
00:15:41.130 --> 00:15:43.140
they keep on printing in the news

380
00:15:43.140 --> 00:15:44.850
No wonder some of us have fears

381
00:15:44.850 --> 00:15:46.260
when out in crowded place

382
00:15:46.260 --> 00:15:48.360
They see the cane but can't explain

383
00:15:48.360 --> 00:15:50.880
why we look them in the face

384
00:15:50.880 --> 00:15:52.980
There's some of us who stay at home

385
00:15:52.980 --> 00:15:54.930
convinced of the excuse

386
00:15:54.930 --> 00:15:56.880
that because we don't look blind enough

387
00:15:56.880 --> 00:15:58.890
there's a need to be recluse

388
00:15:58.890 --> 00:16:00.480
Don't waste your life on people

389
00:16:00.480 --> 00:16:02.280
whose opinions are way off

390
00:16:02.280 --> 00:16:04.290
Just swipe your cane with courage

391
00:16:04.290 --> 00:16:06.990
hold your head with pride aloft

392
00:16:06.990 --> 00:16:09.030
So never doubt what we're about

393
00:16:09.030 --> 00:16:10.830
despite what some believe

394
00:16:10.830 --> 00:16:12.540
Come join me on my mission

395
00:16:12.540 --> 00:16:14.970
and change the way we are perceived

396
00:16:14.970 --> 00:16:17.370
I won't let the haze that fills my eyes

397
00:16:17.370 --> 00:16:19.410
consume the rest of me

398
00:16:19.410 --> 00:16:21.660
There's more to life than edge of knife

399
00:16:21.660 --> 00:16:23.520
despite what I can't see

400
00:16:23.520 --> 00:16:25.230
Try not to care as people stare

401
00:16:25.230 --> 00:16:27.330
with looks of vague suspicion

402
00:16:27.330 --> 00:16:30.720
But why should I explain to them the terms of my condition

403
00:16:30.720 --> 00:16:32.130
Though it's much simpler to stay home

404
00:16:32.130 --> 00:16:33.780
won't waste another day

405
00:16:33.780 --> 00:16:37.290
Their pity's just an obstacle that's getting in my way

406
00:16:37.290 --> 00:16:38.250
And though I am blind

407
00:16:38.250 --> 00:16:40.770
won't be confined by others misconceptions

408
00:16:40.770 --> 00:16:42.840
This poetry that spills from me

409
00:16:42.840 --> 00:16:45.450
will change their blind perceptions

410
00:16:45.450 --> 00:16:47.880
Though anxious chest and days depressed

411
00:16:47.880 --> 00:16:49.710
have far from disappeared

412
00:16:49.710 --> 00:16:52.230
I've learned to breathe while I still grieve

413
00:16:52.230 --> 00:16:54.570
control these things I've fear

414
00:16:54.570 --> 00:16:56.640
My kids look on not on what's gone

415
00:16:56.640 --> 00:16:58.410
but all each day I teach

416
00:16:58.410 --> 00:17:00.090
For if tomorrow their eyes pay

417
00:17:00.090 --> 00:17:02.400
life's dreams are still in reach

418
00:17:02.400 --> 00:17:04.230
So I'll not cry as vision dies

419
00:17:04.230 --> 00:17:05.850
won't focus on the blur

420
00:17:05.850 --> 00:17:07.530
No point in holding on to how

421
00:17:07.530 --> 00:17:09.988
those days and eyes once were.

422
00:17:09.988 --> 00:17:10.821
There you go.

423
00:17:11.670 --> 00:17:15.150
Bravo, love it, thank you so much.

424
00:17:15.150 --> 00:17:18.570
And something tells me there's plenty more

425
00:17:18.570 --> 00:17:19.800
where that came from.

426
00:17:19.800 --> 00:17:24.800
So for people who want to find out what you're doing,

427
00:17:25.050 --> 00:17:26.280
what's going on in your world,

428
00:17:26.280 --> 00:17:27.480
and of course get access

429
00:17:27.480 --> 00:17:29.820
to the poems that you choose to share,

430
00:17:29.820 --> 00:17:30.990
where can they do that?

431
00:17:30.990 --> 00:17:33.420
So I'm in really fortunate position now

432
00:17:33.420 --> 00:17:36.420
where literally if you type in "The Blind Poet" onto Google,

433
00:17:36.420 --> 00:17:37.350
all this stuff will come up.

434
00:17:37.350 --> 00:17:40.050
But The Blind Poet Dave Steele on all social media,

435
00:17:40.050 --> 00:17:42.270
Instagram, Facebook, and the likes

436
00:17:42.270 --> 00:17:45.180
of also my website is theblindpoet.net.

437
00:17:45.180 --> 00:17:48.090
But, with regards to literature,

438
00:17:48.090 --> 00:17:51.690
I've released four books now and counting.

439
00:17:51.690 --> 00:17:52.680
More to come.

440
00:17:52.680 --> 00:17:54.397
Three, which were named after that song

441
00:17:54.397 --> 00:17:56.430
"Stand By Me RP" volumes one, two, and three,

442
00:17:56.430 --> 00:17:58.200
which are just collections of poetry,

443
00:17:58.200 --> 00:18:00.360
going right from the start of my diagnosis

444
00:18:00.360 --> 00:18:01.470
all the way through.

445
00:18:01.470 --> 00:18:04.650
And the latest one that came out just last year

446
00:18:04.650 --> 00:18:06.510
was my first children's book,

447
00:18:06.510 --> 00:18:08.910
which is called "Austin's Amazing Adventures,"

448
00:18:08.910 --> 00:18:12.660
which is a book based on my son Austin.

449
00:18:12.660 --> 00:18:14.670
In the book, he's a young visually impaired boy

450
00:18:14.670 --> 00:18:16.080
with his best friend, his guide dog.

451
00:18:16.080 --> 00:18:19.950
And it's about helping children with disabilities

452
00:18:19.950 --> 00:18:20.970
be better understood

453
00:18:20.970 --> 00:18:22.860
and breaking down those needless social barriers.

454
00:18:22.860 --> 00:18:24.993
And it's short, poetic stories.

455
00:18:25.860 --> 00:18:28.410
So really, really proud of all those.

456
00:18:28.410 --> 00:18:30.330
Check me out and send me a message anytime.

457
00:18:30.330 --> 00:18:32.790
Fantastic, and we'll have all that information

458
00:18:32.790 --> 00:18:33.720
in the show notes

459
00:18:33.720 --> 00:18:36.510
so you all can check it out as well.

460
00:18:36.510 --> 00:18:40.170
Dave, I so appreciate your stopping by sharing your story,

461
00:18:40.170 --> 00:18:41.970
your poetry with us.

462
00:18:41.970 --> 00:18:44.070
It is so much appreciated

463
00:18:44.070 --> 00:18:46.830
and I've really enjoyed it, thank you.

464
00:18:46.830 --> 00:18:47.663
Oh my absolute pleasure.

465
00:18:47.663 --> 00:18:49.470
Thanks for having me.

466
00:18:49.470 --> 00:18:50.970
Got something to say?

467
00:18:50.970 --> 00:18:54.090
Share your thoughts about this episode of "Hadley Presents,"

468
00:18:54.090 --> 00:18:56.640
or make suggestions for future episodes.

469
00:18:56.640 --> 00:18:58.290
We'd love to hear from you.

470
00:18:58.290 --> 00:19:02.550
Send us an email @podcastathadley.edu.

471
00:19:02.550 --> 00:19:07.550
That's P-O-D-C-A-ST@hadley.edu.

472
00:19:07.800 --> 00:19:12.693
Or leave us a message at 847-784-2870.

473
00:19:14.220 --> 00:19:15.855
Thanks for listening.

474
00:19:15.855 --> 00:19:18.438
(bright music)