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#BlindTok is the weekly podcast where the vision loss community finally gets to have the conversations that matter without having to explain the basics first. Hosted by Murray Elbourne, CEO of Amerability, and co-host Tammy Jackson, a healthcare professional navigating life with retinitis pigmentosa, this show brings together real stories, real struggles, and real laughs from people across the entire blindness spectrum. Every week tackles topics the community actually cares about, from social isolation and career reinvention to dating disasters, cane anxiety, family dynamics, accessible tech that actually works, and everything in between. Guests from all walks of life share the messy, unscripted truth about adjusting to vision loss, the kind of honesty that never makes it into awareness campaigns but absolutely needs to be heard.
Whether you're newly diagnosed and trying to figure out what comes next, years into your journey and navigating a rough patch, or someone who loves a person with vision loss and wants to truly understand their world, this podcast meets you where you are. Born out of the thriving #BlindTok community on TikTok, where thousands have already found connection through shared experience, this show gives those conversations the space and depth they deserve. Expect candid storytelling, practical insights, community questions, the occasional embarrassing moment that every person with vision loss will immediately relate to, and two hosts who live this life every single day and aren't afraid to talk about all of it. New episodes drop weekly because this community waited long enough for a seat at the table, and now the table is ours.
Kind: captions
Language: en
here with me. There's nothing we can do
or
I know we can go so far. This is who we
are. We are
Hello everybody and welcome to episode
13 of #BlindTok. We've had some
technical difficulties, and we're ready
to roll now. Uh, I'm pleased to be able
to welcome in my regular co-host, uh TJ.
TJ, how are you?
Hey, I'm good. How are you?
I'm doing fantastic. And today, special
from across the pond, as they say, is
our first international guest.
Joe, how are you?
I'm really well, thank you. Thank you
for having me. I didn't realize I was
the first international guest. That's
You are. I'm so excited.
Allison disability rights started to
claim that she'd been all around the
world, so she should technically our
first, but I reminded her that she is an
American citizen. She does qualify as an
international guest. So,
exactly.
She'll be a bit feisty about that. But
Joe, you are our number one.
Amazing. Thank you for having me.
Well, um I guess you know we usually
just start off at at diagnosis point um
as the first question and so um could
you kind of run us through your
diagnosis and how um you learned about
your vision loss and uh and and I guess
that whole scenario.
Yeah, of course. So I have an inherited
retinal disease called lever congenital
amorosis which essentially is a very
early onset infantile form of RP
retinitis pigmentotosa. So I have always
had a vision impairment. Um I was born
with nestagmus. So my mom noticed quite
early on that my eyes would shake
involuntarily and I also was born night
blind. So I've never been able to see in
the dark or in dim lighting and I have
always had a restricted visual field. So
I had habilitation training from very
young. I used a long white cane from the
age of four because of how restricted my
visual field was. However, my central
vision was was quite functional. Um I
could get by in mainstream school with
an additional light and a magnifying
glass. We were told that my vision was
stationary. Um, so I was diagnosed with
nestagmas, which I do have, and
stationary night blindness, which I
actually don't have. That was a
misdiagnosis
because at the age of seven or eight, we
noticed that my vision was deteriorating
further. Um, and to cut a very long
story short, at 11, I was diagnosed with
the condition that I do have, Bieber's
congenital amorosis. Um, and I was
registered blind on the same day because
of how rapidly my vision had
deteriorated. It continued to
deteriorate rapidly throughout secondary
school. So I was diagnosed with a
condition the final week in August and
then I began learning Braille the first
week in September and that's how rapid
the progression was. So Braille really
helped to helped to carry me through
secondary school. Um, and I suppose I
felt like a little bit like an empty
shell after that point because I think
when my peers were discovering who they
were and kind of developing their senses
of identity as a young adult around that
age, I felt like I was losing myself in
every sense of the word. Um, and it
wasn't until I got my first guide dog at
18, just before I started university,
that I actually started to kind of
discover who I was and start to to gain
my independence really. Well, um I think
you know it's it's pretty jarring to be
able to go through that in such a young
age but also so rapidly, right? As we
talk we've talked to people who have
lost their vision a little bit later in
life and got to do some of the things
with the vision that they wanted to do
like you maybe drive and things like
that. But
at 11 to go through that so rapidly, it
had to be like you said, you know,
really deflating for you. um what are
ways and before we kind of go that route
actually I want to talk about the
misdiagnosis because this is a thing
that TJ and I have talked about a lot
and I was just at a conference last week
with about 30 families um and parents of
kids under 13 and yeah
diagnosis was a big issue and we had the
uh head of um the low vision clinic from
Seattle children's hospital um on the
panel with us and common misdiagnosis is
is so important to understand and talk
about um because there's so many cases
of it. So when you were misdiagnosed um
the first time and maybe you've spoken
to your family about this to hear their
perspective, what what was that like
when you eventually found out that that
wasn't true?
I think because I was so young, it
probably had more of an impact on my
parents than what it did me. Because to
me, although I was losing my vision,
vision impairment was normal. And around
the time that I received an accurate
diagnosis, I had already been
experiencing deterioration for 4 years
before that point. It was a a long time
coming. And I think um in the in the
room when I was diagnosed, you know, the
the doctor he kind of dilated my pupils.
By this point, we were having a second
opinion um with themologist and he
dilated my pupils and he only looked in
my eyes for a fraction of a second. Um
he just let out this almighty sigh and
he said to my mom, "I'm really sorry. I
don't know how this has ever been
missed." Because to him it was blatant.
And I remember there was a fraction of a
second and she just burst into tears.
And I was only young at the time, but in
hindsight it kind of it's almost like
his words confirmed what she'd always
thought and she was just waiting to hear
it out loud. So I don't think she was
shocked and I think the upset was more
relief that she finally knew um what was
going on and that everything kind of
made sense at this point. I, as I say,
was I was very young and I'd known that
my vision was getting worse, but to me,
I think it was more um that, you know,
the consultant had said that because of
how rapid the progression was, I likely
wouldn't retain any functional vision
beyond the age of 20. So, we were
talking 9 years from diagnosis to
complete blindness. And to me, I wasn't
thinking about learning Braille the
following week. I I started to think,
well, what am I going to do as a job? I
knew I wasn't going to be able to drive
because I was already visually impaired.
But I had enough functional vision to
kind of think, well, I might go down
this career path or um you know, I I'll
manage raising a family. I'll be able to
buy my own home. And then to think that
the vision that I did have that I was
managing and coping very well with was
going to go, it was almost like
everything had been pulled beneath me.
Um, and I'd wanted to be a midwife from
the age of three. I know that's very
young to want to be a midwife, but all
of a sudden, you know, I started to
question that and everything just it was
almost like my world had started to kind
of tumble around me. I mean, I know I
was very young. Um, and at the time I
think I was more so focused on the
impact it was having on my mom because
of how upset she was, but it was more
kind of the longer term worrying about
life beyond childhood, if that makes
sense.
Yeah, 100%. Um,
yes,
TJ. Uh I think you know we've we've been
through this so many times in the
interviews that we've done and um from
your perspective uh
I'm sure you can relate in a different
way because you you know you were
diagnosed at an older age but uh
similarly um the shock of of what that
was comparatively to what Joe was
talking about with her mother. Um
there's always shock. Yeah, there's
always
it is there's there's always shock and
there's always the wondering and that
sort of thing. But for me also in
learning my diagnosis then things
started to make more sense as to why
because I honestly
went through life thinking I was just
clumsy or that you know I just needed
assistance when it was dark and that
sort of thing. for some reason I was
different and it and and I always felt
different. Um and it and I had
absolutely no idea
the reasons behind it, you know. So it
all sorted
starting to make sense and I was, you
know, I'm like, well, this, you know,
this is exactly why I always have been
the way that I've been and and I'm not
actually clumsy. I I just can't see that
well. and and now I have a definitive
diagnosis no matter what that looked
like. Um, at least I knew, you know, and
it kind of I kind of had to undo some of
the things that I was thinking about
myself in the fact that, you know, I I
was
able to do athletics and things like
that. It wasn't that I was clumsy. I
wasn't tripping over my own two feet. It
was there was an actual reason behind
it. So, um, you know, there there's I
think there's a a
a twoway street when it comes to that
because you're you're thankful that you
know, but then you also wonder why it
had not been diagnosed or seen
previously where you could have learned
early on a little bit more, you know.
So, I came to that crossroad as well.
Yeah, absolutely. Do you have anyone in
your family with um Libras? Is it
No, it was very much out of the blue. Um
it's it's quite a rare genetic mutation
that I have. It's t one um which is also
associated with retinitis pigmentotosa
as well.
Um yeah, very much out of the blue. It's
automa recessive. So both my parents um
carry a copy of the gene, but as far as
we're aware, you know, we we went back
through the family tree and there's
nobody being affected that we know of
previously.
Same with me with retinitis
pigmentotosa. Absolutely no one.
Yeah, it's a it's a very interesting
thing. I I know a family in Australia
with um three kids with retinitis
pigmentotosa and um and then it just
kind of skips a generation um in
between. So the the genetic makeup of it
is very particular I think in how its
um Joe obviously you know at 11 you have
to grow up really quickly and like you
were talking about
think about how you're going to live the
rest of your life and how you're going
to adjust. That's I feel like that that
was me as well and and a lot of um kids
who have blindness and low vision at an
early age really grow up quick because
they have to adapt change. Can you tell
us about that journey for you um in your
kind of post diagnosis and teenage
years?
Yeah, absolutely. I think you've hit the
nail on the head there. That that is
very true in what you've said because I
often start feeling robbed of my
adolescence.
Yeah.
So I did attend a mainstream secondary
school but it was out of town because um
there was a school about 35minut drive
from my house in a different town that
had a a department for students with
vision impairment and they had a
specialist qualified teacher for the
visually impaired. Um, and I needed to
learn Braille and I needed my lesson
resources adapting. So, I had taxi
transportation funded. So, I
went to primary school in my hometown
and then moved to a different town with
a completely different cohort of
students in secondary school. So,
already I knew that, you know,
socializing outside of school was out of
the question because I would travel back
after school to my hometown. So, I
missed out on that aspect. um of
socializing and then also I feel like I
couldn't really relate to my peers. So
there were there were children in this
school who'd been completely blind from
birth who already knew Braille and then
there were mainstream students the other
side of me who were reading standard
print and I felt like I was on this
bridge between the two. Um, and I
remember sitting in the classroom one
day thinking, I'm going from this person
on my right and I'm going to end up in
the situation of of the person who's on
my left. And everybody understood the
students who had been visually impaired
from birth, was severely visually
impaired from birth. They knew from day
one that they used braille to access the
lesson resources. Um, and I felt like I
was stuck between these two types of
students. and I I just felt so
misunderstood because I started school
reading large print with a magnifying
glass. Um I eventually moved on to using
a laptop with speech and then I moved on
to to full braille and it was just such
a complex journey in such a short space
of time that I couldn't even stop to
process who I was or where I was in
life. So it's no wonder that I felt like
nobody else understood me either. If
that makes sense.
Yeah, it really does. I think, you know,
we I'm in the same boat because I had
about 2200 or 600 660 vision in in the
UK um from kind of birth and then when I
was 12 I got cataracts on top of that
and I lost kind of 14 15 I lost uh more
than half of my vision. Um
and so they took me to the school for
the blind and wanted me to crash course
Braille for 12 weeks. So I'm in a very
similar position to you. um where you
know you could cope with large print and
you could cope in the mainstream school
and then you go to a different
environment they want you to learn
Braille you know you still have useful
vision um and you are caught in that
middle ground you know and I think that
that's a challenging situation because
like you said you know the people the
students understood if you're completely
blind and you're walking around with a
cane and you're you know you're using
Braille all the time and that's what
you've always done but I think when you
can see a little bit like I used to be
in the school rugby team and the school
basketball team for high school and
people would say well how can you go and
play rugby and basketball but you can't
read the board you know and so from my
students perspective that was the hard
part in explaining your vision and to
your point you can't really explain
because you do feel like you're
somewhere in the middle in this like
kind of lost space um tell me you know
from a study point of view how you dealt
with that.
I was always very much a conscientious
student and I think that carried me
through. So I am really really grateful
for that. I always wanted to do well
academically. So I could quite easily
switch off from the impact that it was
having on my social life and just solely
focus on my academic studies until it
got to a point where I needed to use
Braille full-time. And at this point I
was 13 or 14 and I was your typical
stubborn teenager. I did not want to
accept any help or support. I just
wanted to be like my sighted peers. Um,
so I refused to use Braille and my
academic performance took a real hit for
a year. Um, to the point where in my
third year of secondary school, I was
pulled out of external exams and because
it had had that much of an impact on me.
And I think there are two times in my
life where I can say I have felt true
depression as a result of my sight loss.
And that was one of them because that
was the point where I realized, okay,
this is it. This is blindness. This is
what what I've been dreading. Um, and it
it was immediately after the teacher for
the visually impaired said, right, we're
going to start to use Braille in your
lessons. And it something clicked in my
head and I was like, "No, I'm not doing
it." I just I switched off from life. I
stopped talking to people. I stopped
eating. I chucked myself in my bedroom.
I wouldn't go out with my friends with
my cane. Um, couldn't complete those
exams. and everything just stopped. I
felt like I felt like I I kind of wasn't
there. It's almost like everything was
going on around me, but I wasn't moving
forwards. I was just stuck. And it
wasn't until I got the results back from
my mock exams for the externals that had
been pulled out of that because I was
such a conscientious student, I've been
told what my grades were and they
dropped so dramatically, I thought,
right, that that's it. I'm not having it
affect me in this way. Like, I want to
do well in life. if I want to be able to
move forwards. And that was the real
turning point for me was kind of seeing
my my my grades drop on paper because
not because I'd kind of stopped revising
or I was lazy with education, just
because I'd refused help and support.
And I think that's one of the main
turning points where I realized that
actually accepting help and support
would get me onto the path to
independence. And that's when my grades
started to improve again. um I got
accepted into six college to do the to
study the subjects that I wanted to
study and that's when I started the
application process for a guide dog as
well. So that was the the main turning
point academically really.
Well it's that's amazing.
Yeah, it's a big turning point and I
think you know again through all of the
stories we've just heard that everybody
has that moment right where they have a
choice. Yeah,
they have to they have to make the hard
choice of coming to terms or they don't
you know and they they continue down
that path that you were on at 16 and you
know we we kind of have spoken with
people like Joey as an example who
didn't come to terms with it till much
later in life and and that's a journey
in itself right so I think um it's a
powerful thing TJ what about um from
your perspective you know what was your
turning point where you kind of thought
you you had to accept it.
I think it was I I'm a lot like Joe in
the fact that um one day I just realized
that I didn't want to be everyone else
was moving forward and everyone else was
living life and I was sitting here
looking at life via social media and
living through others. And I finally
decided, you know, I am not getting any
younger. And my mom passed away at 45
and had so much life to live and missed
me having, you know, a child and and
that sort of thing and missed grow
watching her grow up and and so my
daughter was still young and I didn't
want to rob her of things, you know, of
me not being a part of things. I didn't
want to and and also I needed to set an
example for her to know that no matter
what you need to push forward and be the
best version of yourself and not let
this define me. And so I think for me it
was it was truly just realizing that
coming to terms after I had fully
accepted what was going on and dealing
with it internally. Um then I stayed in
a very dark place for a while but I
started to emerge and it for me was very
liberating to um do O andM training that
because that gave me more of my
independence that I felt like I had been
stripped of um and just going going on
about life like others were um and and
not letting fear stop me. Um and and I
was able to be a part of everything that
my daughter was doing. I was at every,
you know, everything that she did, I was
there for and I'm very thankful for
that. Um, that pivotal turning point in
my life, you know, it was just huge.
Joe, what about your family during this
time? So, you know, obviously, um, mom
had been and dad had been through it
with you. Um, seeing
your fall with your academics and then
obviously, you know, the attitude of
being pretty stubborn through this. um
how was that kind of impacting family
life and um I know that you have a big
family um and so kind of how did that
play within internally within the
family?
So I am one of seven and I was the fifth
born sibling and all of my siblings
before me had full vision. So my mom had
had four teenagers before myself. Um and
it was probably very difficult for her
to decipher what was just you know your
typical adolescent um being quite
stubborn and then what was kind of you
know was it coming from the sight loss
itself or was it just a complex mix of
both. So I feel like I maybe had
slightly more leeway than the others
because of what I was going through.
However, my mom has always been of the
mindset she will say or I've been cruel
to be kind. And I know exactly what she
means. Um because there was also an
incident where I was going out with my
friends one day and this was around the
time that my grades had started to fall.
As well as refusing to read Braille, I
was refusing to use my long white cane.
And my mom turned around and said to me,
she said, "Your vision's not at a point
now where you can refuse to use that
because you're going to go out and
depend on your friends and your friends
are not always going to be there for
you. So, you either go out with your
cane or you're not going out at all. And
at the time, I thought that is
absolutely shocking. How can you say
that? That's so mean. But in hindsight,
you know, I'm so grateful she did that
because if not, I would have learned to
depend on other people and I wouldn't
have been able to stand on my own two
feet. And it just so happened that in
the end I had to give in because I
thought, well, I really want to go out.
You know, I was 14. Um, so I did use my
cane this particular day. And it just so
happened, which I think was just by
chance, that I was jumped on in the
street and attacked um by a group of
girls and boys who were slightly older
than me. And at the time, I associated
that with using the cane, which in
hindsight, I don't think it was, but
being the age that I was and how
reluctant I was to use it, I just put
the two and two together. And from that
point forwards, I was, you know,
extremely reluctant, more so than I had
been previously, to to use it because of
the incident. And my mom just sat me
down one day and she said, "Look, I can
completely appreciate that, you know,
you've got negative associations with
the cane now, and because of the trauma
of the incident, you don't want to use
it." But she said, "At the end of the
day, you're only going to hinder
yourself if you don't use any form of
mobility aid. So, you either choose to
use a cane or we'll contact Guide Dogs
UK and start the ball rolling with that.
And I said, you know what, that's not a
bad idea. Thankfully, I'm a dog lover.
So, I was quite on board with that. So,
we contacted Guide Dogs and started that
process, which I'm very thankful that we
did because had she not sat me down and
had the conversation, I don't think it's
something that would have ever cropped
up um that would have ever crossed my
mind at that age. I didn't think I was
old enough to get a guide dog. I'd never
considered walking down the street with
a guide dog. like I didn't think I was
there. I didn't kind of put myself in
that category, but actually I was. And I
think it's because my vision had
deteriorated so rapidly. And it's kind
of going back to what I mentioned
earlier that I couldn't keep up with it.
I couldn't process the point at which I
was at because it was deteriorating so
quickly at such a young age. And the
minute we had that conversation, that
was kind of another turning point for me
with um contacting guide dogs. So she
was very she was very fair but she was
quite strict in kind of ensuring that I
got on to the path to independence as
soon as possible.
I want to ask you about the incident
because um I know that especially a lot
of women um and younger girls uh are
fearful that it's a target, you know,
and um can you talk to me about that
feeling and and I know it must have been
pretty traumatic for you like um how do
you and now you say, you know, maybe it
wasn't just the cane that that caused
that to happen, but those feelings of
insecurity or being targeted because you
look different or you look vulnerable I
think are real and I'd love to kind of
unpack that a little bit because we do
have a lot of younger ladies um watching
this uh podcast and it's important to I
think talk about that.
Yeah, absolutely. Um, so the reason it
happened was this particular group had
said that I was looking at them funny,
that I'd pulled them quite a funny look.
And I think in their minds, they
probably thought, well, once she's got a
cane, she shouldn't be able to see us.
So, it goes back to this whole public
misconception that we're very aware of
that, you know, blindness is blindness
and nothing else. We know blindness is a
spectrum, but there's a public
misconception that if you if you have
any form of mobility aid that signals
that you have blindness, you can't see
anything at all. So, I think there was
probably some confusion there um that
kind of caused this to happen. So, in my
mind, I thought, well,
how am I supposed to act? Because at
that time, I had a lot more functional
vision than what I do now. I had a very
restricted visual field, which was why I
was using a cane. But, you know, I could
recognize faces still at this point.
Even if I could I'd walk into a lamp
post because of my peripheral vision,
but I could still recognize someone's
face who was close enough to me. And I
thought in my mind that that is going to
confuse people. And if that is what's
caused this, that's potentially putting
me in a very vulnerable position. And I
was trying so hard to, you know, develop
my independence in in time for young
adulthood. So, it kind of threw me back
because I thought I can't do right for
doing wrong here. I'm trying my best to
get out there like my sighted peers are
and kind of do accept the the support
and the help that I need in order for me
to do that, but that's confusing people.
And then I'm it makes me feel even more
vulnerable if that makes sense. So, I
went through a phase of feeling like
well what is the point in even getting
out there and trying if I'm I'm just
having these setbacks.
But I think when I got the guide dog,
that was kind of like a a turning point
for me as I mentioned earlier because I
feel like we all we all are either can
users or guide dog users. Um I think I
know the odd person. It's very rare that
somebody's very comfortable using both.
But I think there's a lot of trial and
error involved and it's finding what you
feel comfortable with and what you feel
safe with. And the minute I picked up a
guide dog harness, I thought this is me.
I'm unstoppable here because I feel
safe. I feel confident. I feel secure
and my dogs just feel like an extension
of me. And I know for a lot of people
that they can get to that point with the
cane as well. I unfortunately never did,
but I know that some people do. And I
think there's there's something that
works for everybody. And it was just a
lot of trial and error um to get to get
to that point and to to feel comfortable
and to feel confident. And I think as a
as a young female, you do kind of, you
know, you worry about these things. But
I just think the more you get out there
and the more you do things and the more
you tackle life, it it starts to feel
like the norm and you stop worrying
about it in time, um that I think that's
what helped me is just getting out there
every every day. And you know, this was
a one-off incident. Nothing has ever
happened like that since.
Yeah. So, for a long time it was in the
back of my mind, but the more I just
pushed through life and thought, "No,
I'm I'm getting out there and I'm
tackling it because at the end of the
day, I'm not going to allow what
happened on that day in that group of
teenagers to stop me from living my
life."
So important, I think, to to understand
that. And, you know, we I see so many um
youth that we work with that are not
independent and haven't made that
decision to be independent. and parents
worry and talk to me about how can the
best separation happen and I think it's
a very individual journey honestly it's
not the same for any two people and you
know your advice about getting out there
and really pushing yourself is one that
I um adhere to as well I you know say
look you have to fail sometimes before
you succeed and trying is is really the
important thing and you know even even
at your stage, TJ, where you lost your
vision and you had to, you know, um,
stop driving at night and and do things
differently and start to use the game.
Like, we all go through that in the
blind spectrum. And you're right, people
in the mainstream don't understand that
spectrum very well at all.
And a lot of around that. And so, um,
I'm so pleased for you that your guide
dog, um, gave you that independence. And
I've seen other young u women who have
made that decision at an early age and
felt really liberated um by using a
guide dog. And so it is a very
individual journey that I think isn't a
cut and paste model. It has to be um a
decision individually with the family
and and yourself to be able to make that
choice.
Yeah, absolutely.
TJ, do you want to take uh us through
the the college years, the university
years?
Yes. I'd like to know um when you so you
said you got your guide dog at 18. What
happened from there whenever you got
accepted into your um your college years
and what that looked like for you?
Yeah. So I was matched with my very
first guide dog who was called Bubbles
in March 2012. I was completing my final
college exam. So guide dogs were very
supportive and they actually held her
back until July. um so that we could
complete training once my final exams
had been completed. So once I'd
concluded my college year um I know
college is university for you guys,
isn't it? College was kind of like
further education for us just before
university.
I trained with bubbles in July. We
qualified mid August and then I started
my undergraduate degree in September. So
it was very quick. Um, yeah,
I'd kind of just qualified with her and
our route to the university. I didn't
actually move and live on campus. I
traveled and that route was kind of my
first ever independent route just
because of how old I was when I lost my
vision. So, when I got my first guide
dog, I gained my independence. I didn't
regain it because I'd never really
developed it in the first place. So it
was quite overwhelming initially but I
think because of how conscientious I was
and how well I wanted to do and how much
I was kind of looking forward to
studying the subject that was a
distraction for me really um and
everything just naturally fell into
place. I had some difficulties at the
university with um accessing resources.
So I had I I was used to reading Braille
by this point. you know, I'd gotten very
comfortable with that. I completed all
my college exams in Braille. Um, and
then there was a funding issue, so I
very quickly had to learn how to fully
rely on speech software. I'd have my
exams transcribed into Braille, but
other than that, all of my coursework
was speech. So, I had a a real whistle
stop course um on using speech to access
kind of journal articles and things like
that, which in hindsight I'm grateful
for because you can obviously get a lot
more done relying on speech rather than
relying on braille, but that first year
was just a real whirlwind because not
only was I getting used to studying at
an undergraduate level, um and I was
studying psychology as well, which is
quite a complex subject area. I was kind
of trying to enjoy that, but trying to
get to grips with speech. Um, trying to
get used to kind of the social side of
things. And up until this point, I
hadn't really socialized outside of
education because I didn't have the
means to, you know, my my school and my
sixth college were both out of town. So,
I would get a taxi home and my friends
would kind of still be in this other
town. Whereas now, I had the opportunity
to travel independently and go out with
friends. And I'd never really done that,
not fully until this point. So
everything was kind of happening all at
once, if that makes sense, which I'm
very grateful for in hindsight because I
I learned it all kind of in that one
year. And then by my second year of my
degree, I'd say that's probably when I
felt the most comfortable and the most
confident in my own skin. I'd settled
with my guide dog. Um, I was really,
really enjoying the subject. I made a a
good group of friends. I was getting
kind of good life, a good balance
between studying and the social side of
things. So yeah, I think after we'd got
through that first year, things started
to to settle down and and feel like the
norm. Then
it's hard enough. I think whenever you
transition from your high school years
going into college, university, that
sort of thing, like it's hard enough as
it is for for every child, right? like
because you're you're going through the
changes of life of living at home and
you've had everything, you know, kind of
provided around you and that sort of
stuff and and then you go
to quickly being on your own and then
you have you're having to study in a
different way and you're having to make
different friendships and you're having
to navigate all of these new things. So
I think the college life experience is
enough within itself to cause anxiety,
right? Like I know my daughter her first
year of college was ones of ups and
downs and you know it she would call me
crying one week and then call me the
next week and was you know very happy.
So it was that balance and I think
throwing what you were going through on
top of that I I mean it's just I can't
imagine all the changes you had to face
doing that so that that that it's
amazing that you were able to find your
find your way. Were there resources
readily available for you there? Like,
were they eager to assist you with the
different things that you needed to make
sure that your classes went well for
you? And were you like in a minority of
people on campus with a vision
impairment?
Yeah. So, I was the only person that I
knew of who had been through the
psychology school at this particular
university. And thankfully because my
lecturers were psychologists, they were
naturally very caring and compassionate
people. So they did everything in their
power to support me. I had a meeting
prior to my degree with the disability
services at the university and they kind
of sat down and laid out everything that
they could put into place. And I feel
like that was very much under false
pretenses because when I did commence
the course, a lot of that was stripped
back. I'm not sure if there was a
problem with the funding that year, but
I feel like they promised a lot that
they never delivered on. And that was
quite worrying until my psychology
school stepped up and said any gaps that
they leave, we'll fill. Um, so they were
absolutely amazing. So a lot of the
funding for the resources that I needed
came out of the psychology school's
budget rather than the disability
services department
which is not right but I am so so
grateful that I had such a a supportive
team of staff around me in in my
lecturers um and that's probably because
of the field that they were in. And then
in addition to that because of it was
psychology a lot of you know my my
fellow students that they kind of were
of the same mindset and I'd been used to
being in a school where I didn't feel
understood and then all of a sudden I
was surrounded by you know there were
mature students on the course and you
know people just kind of took you under
the wing and I I finally felt like I was
being heard. But it is right what you're
saying when you go from childhood and
education where you have specialist
teachers and parents and everybody
fighting for your rights and ensuring
that you have everything in place to all
of a sudden being thrown out into the
big wide world and you've got to self-
advocate. That was a journey.
Yeah, I think self- advocacy is is a
really important point to touch on
because you've had to advocate for
yourself, you know, throughout your life
as well. and you it not only you know
makes you more mature um but it it helps
you I think be able to understand a
little bit better about what the
reasonable accommodations could be and
to your point when you don't get those
then you're able to be able to I think
pivot a little bit better than if you've
never done that and never done that at a
younger age and so becoming more mature
gives you that perspective um about
change that you need and also makes you
more self-aware. It's interesting that
you chose psychology because I think
that's that's a a path that a lot of
people with blindness and low vision go
down because they maybe have not had the
empathy and the understanding um
throughout their years and they want to
be able to give that and they also want
to understand that. Can you talk to us
about that choice to pathology?
Yeah. So, as I mentioned earlier, you
know, earier earlier in childhood, I
always wanted to go into kind of mid
midwiffery or pediatric nursing and it
got to a point where I knew that wasn't
going to be possible. So, I did always
kind of want to go into a a health care
profession in one way or another. And I,
you know, was looking through the the
courses at at college once I'd finished
school and I chose to study health and
social care, English literature and
psychology. And that the minute I
started to to study psychology, I
absolutely fell in love with that. I
thought it was it was so fascinating
that you could kind of interpret things
in your own way and just, you know,
learning about human behavior. And I
think a lot of what you've said there is
right that you know you do become very
self-aware and in turn that that makes
you quite interested in other people and
how they behave and it it just all kind
of linked up with wanting to go into the
health care profession. So then I
started looking into the different
branches of clinical and educational and
you know educational psychology linked
up a lot with vision impairment. So you
know I studied that for a long time. Um
then there was kind of clinical health
psychology is is what I studied my
masters in eventually um because I was
volunteering in the hospital at the time
and it just it everything just
fascinated me about the subject and I
thoroughly enjoyed it to the point where
I didn't actually feel like I was
studying. It felt more like a hobby
because I was kind of
Yeah.
Um, tell us about because we have
obviously a lot of American listeners
and um, probably the systems are very
different. Um, and of course I'm from
Australia where we kind of come out of
the English system a lot. Um, tell us
about the support system for blindness
and low vision in the UK and in your
area where you were living at the time
and going to university. Uh, how was the
transport system? You talked about
traveling to and from university. what
what was those two functionalities?
Yeah. So, in terms of kind of mainstream
education
when I was in education, it it was,
you know, kind of the the gold standard.
It was the team were very supportive.
So, there was a lot of funding. Um each
student who was diagnosed as having a
disability would have something in place
called an education health care plan. So
that would kind of state what our needs
were, what we needed in place, and we
essentially each had a pot of funding
and that could cover things like um
braille displays,
braille exams, um onetoone support in
class if that was needed. We had if you
were a braist, you had 100% extra time
for your exams. So they took the, you
know, the the additional time that it
required for you to complete those. That
was taken into consideration. And if you
had one of these plans in place, it
protected you up until the age of 25,
which is amazing. So as long as you
remained in education, you could be
supported by your local special
educational needs and disabilities team
where there was a qualified teacher for
the visually impaired who was always on
hand. So that was brilliant. And then
once I started to study at university,
there was something called dis disabled
student allowance. So that would help to
kind of cover the cost of transport
which I never accessed. Um I think I
just got my guide dog so I you know I
was adamant I wanted to travel on public
transport and practice on trains and
things like that. I could have gained
funding for a taxi if I wanted to but
you know I really wanted to kind of get
out there and practice on public
transport.
So there was travel technology and then
lesson transcription and then you could
also apply to have a onetoone assistant
in lectures who could kind of note take
and help you with reading and things
like that that was available. So the
support here is it's unbelievable. It
was at the time when I was there anyway.
Yeah, it's I think you know just
accessing that and again the the
decision to be able to accept um those
services makes a huge difference in your
adult life. Um and if you kind of put
your hand up and say I don't want to be
a part of anything related to blindness
then your journey is going to be so much
more difficult than if you access
resources that can make things a lot
easier. We, you know, I think about
Mandy who was on this and in our room
yesterday when we were on TikTok uh in
in your live and Mandy talked for years
about just struggling in her job, not
asking for resources and then finally
making the decision to say, "Hey, I need
these adaptions and made her life so
much easier." And sometimes we fight
with the internal um because we think it
changes who we are but you know it
doesn't change who you are um to ask for
assistance and get adapted. So I'm I'm
really pleased to hear stories about
where people have u made that decision
at an early age because it really
impacts more effectively and efficiently
their later life I think in many cases.
Yeah absolutely. I think it kind of
relates back to to masking as well. And
when I had enough functional vision, I
would mask as as far as I possibly
could. I would accept I got to a point I
would accept support where it was
needed. But if I could get away with it,
I would mask. And it got to a point
where that was no longer possible. And I
realized that in my skin, I was causing
more problems than what I was if I
eventually just accepted and admitted
that I'd gotten to the point where I
needed non-visual means to to carry out
almost every daily task. Um, and that I
couldn't get away with maximizing the
use of my residual vision anymore or
pretending that I was maximizing the the
my residual vision when actually there
was there was not enough there to do
that. Um, so yeah, I went through a a
huge masking stage for a very long time,
which I know a lot of other people do as
well. I had a lot of discussions with
other visually impaired people around
that topic.
Masking never stops. I think,
you know, um, even when we're just doing
anything, there's a degree of masking
that happens um, internally within us.
And I was thinking about that the other
day when I was driving with my wife and
we were in the car and he said, you
know, I think maybe your vision, you're
losing some vision cuz I think there's
some things that I thought that you
could see that you can't see. And again,
you know, it just kind of again felt
like, well, maybe I have to prove how
much I can see, which is, you know,
ridiculous. We've been married for 24
years and uh she probably knows more
about my vision than I do, but it's um
it never stops to a degree, right? We're
always that internal little thing that
tells us, hey, I have to mask or I have
to prove how much I can see or, you
know, I I don't see as badly as other
people think I see type of thing. So,
never stops.
Yeah. I mean, my my partner and I have
been together for 3 years and still
still to this day, he'll go show me a
photo and he'll say, "Hang on." He tries
his best, bless me. He'll say, "I'll put
my brightness all the way up." So, he'll
turn his brightness all the way up and
he puts it right in my face and he's
like, "Can you see that?" And I just go,
"Oh, yeah, that's great." And I think,
"It's just
Well, uh, TJ, uh, what questions do you
have about any many more questions about
university? And then, um, do you have
questions about the career stuff? Yes, I
do. I want to know where you went um
career-wise after you finished. We've
gotten through your co your college
years and and what was provided, which I
think that's amazing. All the everything
that was available to you to assist you.
That's that's I think that's far more
than what we have here. And um and and
I'm glad to hear that. So, what happened
from there after you gained your degree?
So immediately after my master's degree,
I actually stayed on in the psychology
school. There was a post that came up as
a research assistant within that school.
So I remained there which I think really
kind of helped me to transition from
higher education to employment because I
was in exactly the same environment with
the the same members of staff but in
kind of a different role if that makes
sense. So that was huge. um in kind of
helping me to to make that transition
because up until this point I hadn't a
lot of my cited peers worked part-time
in McDonald's or you know fast food
chains or or retail and as you know with
vision impairment those hands-on jobs
are very very difficult. So you know I'd
never done anything like that really up
until this point. That was like my first
proper job aside from volunteering. So
that was kind of my first graduate job.
I then had a little bit of a break
because I was diagnosed with cataracts.
I had some other health problems going
on and I was waiting on kind of three
different types of surgery. Um so that
kind of set me back a little bit and
then when everything had stabilized and
you know I was starting to accept the
the further sight loss that I'd had I
started to look around for other things
and I was very torn as to whether I
wanted to go down the the educational
route with psychology or whether I
wanted to go down the clinical route. So
I was applying for jobs in hospitals and
schools and a job came up in a school
working within the special educational
needs and disabilities department and
part of that role was braille
transcription. So they were quite keen
to get me on board. Um and I was quite
keen to start work by this point. So I
thought well you know I'll take that and
see see where that takes me. Anyway, I
really enjoyed it. I stayed in this role
for 5 and a half years. Um, and that
took me right up until I think 2021.
So, I was working in the school during
CO. And then after CO, we returned and
things just didn't feel the same in
school because of all of the changes
that had taken place. And do you know
when something just doesn't feel quite
right? And at this point, I was still
living at home with my mom. So, I didn't
really have any kind of major financial
outgoings to worry about. So, I thought
I'm going to drop to part-time at the
school and I'm going to start looking
around for other things because I feel
like I've exhausted education by this
point and I was I was going off the idea
of going down the educational route. So,
I started to apply for um psychological
well-being practitioner roles and just
basically anything that could get me
into a hospital. As it happened, I
dropped to two days in the school and a
three-day role came up as an eye care
leaison officer. I'm not sure if you
have anything similar to this in the US
or Australia. I'd be quite interested to
know actually. But basically um the IAL
leazison service offers a bridge between
opthromology in the hospital and
external services. So we can see
patients and support them at the point
of diagnosis, offer emotional support,
practical support and then refer them on
to say orientation and mobility, um
counseling,
anything that can kind of help them to
you know get on the pathway to regain
their independence. So that bridge is
essential and I thought well that's
going to allow me to gain the experience
that I need in a clinical setting but
also I can empathize with these patients
at the deepest level and it's going to
be such a rewarding role and up until
this point I don't really work with
children in school. So the role I work
with newborns right up until to the
elderly. It's right across the lifespan.
So it was really interesting to gain
experience working with adults. Um, so I
started that role and then I picked that
up full-time not long after I'd started
and I'm still in that role now. So I've
been doing that role for 5 years and I
absolutely love it. It's it's so
incredibly rewarding
and yeah, that's that's basically where
I'm up to career-wise.
There's not uh there's not really a role
like that um in the United States um or
really Australia. um there it's more
everything's around job placement and so
uh for younger families there's I think
I talked about earlier we had the um low
vision clinic u manager from Seattle
children's hospital and so the major
children's hospitals that have an
opthromology department um usually have
a low vision clinic or what we call a
low vision clinic but that is more
functional than emotional support and
honestly you know they might do an
afternoon in practice once uh once a
week and so they might see three people.
Um so the weight lines are you know
months and months to be able to get into
something like that. It is I think
something that's really needed um both
for parents and also for for kids and
adults because the referral system here
is a bit antiquated. Um it's it's a very
like an institutionalized model still
where you have the state agency um for
for blindness and low vision uh offering
services but they're not always
connected to the hospital systems or the
school systems um and the the TVIS or
the um I don't know what you call them
but the assistant vision teachers uh in
the in the United States are a separate
entity with the school district. So
nobody's really connected very well. Um
which is a challenge because then the
the support system is not there
holistically for for parents and
student.
No it is not and it's you know in every
other field it is available. We have my
career is healthcare and so I work
alongside nurse management. We have
those liaons when you're inatient in the
hospital for various things and you're
needing to transition to a higher level
of care or a different level of care for
follow-up appointments. Say you're in
for cardiology. Um the everything is
lined up for you when you are discharged
from the hospital um for these necessary
appointments, but we do not have
anything like that. I know in South
Carolina we we have very few hospitals
that have opthalmology. Our largest one
is in Charleston, South Carolina and
that's the MUSC Storm Eye Institute. Um
and so everything is right there. I have
I went to see them for a second opinion
and um I don't know that they have any
services outside of diagnosing
to speak of within there. You're you're
basically on your own to
figure out where your resources come
from. I know I had to figure it out for
myself.
Oh wow.
Yes. It's definitely a challenging
environment and you know Australia has
the NDIS system and I'm not sure if
you're familiar with the NDIS system in
Australia Joe but um it's a self model
so you go and see an agency and then
basically talk about what you need um
and then you either do or don't receive
funding for those things and then you
manage your funding plan um with that
agency. So, it's a very independent
model, very different from what the
United States is and maybe different
from what the UK is.
Wow. I I didn't realize that you didn't
have a service like that. That
absolutely blows my mind to think that
you could go in and receive a diagnosis
and then just be asked to leave the
hospital with no information whatsoever.
It makes me feel very very grateful that
we we have that service here and and
that I'm part of it.
I think hospitals, you know, they they
do like in Australia before I left, I
was the CEO of Disability Sports
Australia and we would go into hospitals
and do training with clinicians to be
able to have that some of that resource,
but it wasn't given through like the
government. It was independent agencies
going in and doing training and then
offering support. And I think it's so
vital. Um I I did it in Sydney
Children's and um and I think like the
the clinicians were really hungry for it
but it wasn't there as a system. Yeah,
that's a that's a massive um plus for
the UK to be able to
because it starts parents on a journey
and I just hear so much especially here
in the states parents come home they
start googling they don't know where to
start you know it's it's a slippery
slide then to be able to pick which
service is going to be better and they
can't even have a conversation about it
so it's it's a real challenge across the
world I think
yeah and I feel like a A diagnosis of
vision impairment, I think we touched on
this earlier, has made so much worse
when there's a lot of uncertainty. And I
I think however difficult the diagnosis,
if you know what you're dealing with and
you know what's ahead and you know what
support is in place, you kind of you
know what the steps are that you can
take to kind of start to get on track
with things. But when you don't know
where to turn and you're not given any
information, you know, it can feel the
impact can feel tfold. Um, uncertainty
always kind of throws you off.
Yeah, absolutely. For sure.
Well, I think we covered the hard parts.
Now we can have a little bit of fun. Uh,
love to know a little bit about like
some of your interests and your hobbies
and um and how you've pursued them.
Yeah, absolutely. So, as a child, I was
always very interested in gymnastics,
trampolining. That was when I had a lot
more vision. Um, and then as I was
losing my vision, I had the crazy idea
of figure skating because I used to
watch, we have a show here called
Dancing on Ice that 12 and Dean used to
run and I was watching it and I was
like, "Mom, I love this." And she took
me ice skating one day and the the rink
was empty and the the guy that I had
turned all of the lights up and I went
skating and I didn't have my cane. I
wasn't holding on to everybody and I was
like, "I'm free." She was like, "You
love it, don't you?" I was like, "Yeah."
She was like, "Oh dear.
I've unleashed the monster. Yeah. Um, so
I started private lessons and I actually
I think because I'd already done
gymnastics, you know, I kind of took to
it quite quickly and the coach I had was
amazing. She used to describe
everything. She would wear black
clothing so I could see her on the ice
with the contrast and then she'd film
herself like doing kind of jumps and
performance spins so that I could take
it home and watch it on my TV so I could
learn it myself. So that I found that
really accessible at the time. Um, so I
thoroughly enjoyed that and I actually
didn't drop that until I studied my
masters and it was it wasn't my vision.
It was just because I didn't really have
the time to to practice. Um, then I got
into running. So I completed a half
marathon with a colleague at the time.
We we had like one of the RNIB TEDers
and we ran that together for Ret in the
UK.
Um, then I developed shin splint so I
decided running was no longer for me. We
called the half marathon the Great North
Run, but it ended up being more like the
Great North Walk because I had cat
surgery like six weeks before.
So, I didn't get an awful lot of
training time, but you know, I tried my
best.
Um, then I got more into the gym after
that. So, I kind of gave up running and
I started strength training. So, I feel
like I've always been interested in
fitness in one way or another. funnily
enough, having never tackled really any
dedicated blind sports. I know we had a
conversation about this with tennis,
didn't we?
Yeah.
And I now have the tennis sound ball.
So, we're going to give that a go
because I had a personal trainer last
year at the gym and I got really into
strength training, but then I had my
accident at the beginning of the year
and sustained a spinal fracture. And I
think it's just really shifted my
perspective that I really kind of want
to get into to more things fitness-wise
compared to what I was doing before. So,
I'm kind of thrown myself into all sorts
of different things at the minute. Um,
and then in addition to that, I really
love travel. I don't know what it is
about travel. And people say to me,
well, how can you enjoy visiting other
countries so much when you can't see?
And I'm like, it's not just about
sightseeing, you know, there's culture
and meeting other people. There's a lot
more to it. So, yeah, we do travel a
lot. We've fallen in love with cruising
recently actually.
It's uh it's interesting. I was in your
live room yesterday and um your partner
was very enthusiastic about the trip and
and you were talking as well and um my
wife is scared of fish and so she
doesn't want to go on a cruise because
she thinks she's going to get stranded
in of the ocean and have to deal with
fish. So I'm slowly talking her around
uh to cruising. We're hopefully going to
Greece next year and and going to do a
Greek islands cruise which is kind of
the kickoff. So hopefully that will be
great and then we can
but um tell us about you know some of
your favorite destinations that you've
been.
Um so citywise I think my favorite
destinations have been Rome and Budapest
in Hungary. They were amazing. I think I
loved Budapest so much because it felt
for a capital city it was very
accessible. It was predominantly flat.
The streets were very wide. It was open.
There was a huge park and it it didn't
feel busy. Rome reminded me of London
like in terms of the amount of people
there. It was it was like London on
steroids. Rome. Um, as you can imagine,
I I expected that before we went, but
the day we were there, it was 37° and it
there's people everywhere and you know
when you just feel very overwhelmed
trying to navigate somewhere.
So, yeah, they were definitely my two
favorite cities. And then we also
visited somewhere on a one of our cruise
ships. It was our very first cruise
actually. We visited Italy in the south
of France and we were traveling to
Monaco on this particular day. But the
cruise docked in a port called Villa of
France. It was absolutely gorgeous. My
partner was kind of describing the
coastline to me and there were kind of
houses built into the cliffs and the
coastline was absolutely beautiful and
we just we fell in love with it. So, I
definitely want to go back there because
we walked through it for 10 minutes to
get to the train station,
right?
And then again to get back onto the ship
and I said, "Oh, we should stayed here."
Right.
I think we're planning on visiting there
again.
It's funny. You kind of find those gyms
uh
right when you're doing that kind of
stuff. That's the beauty of cruising
really is you think you're going for c
for certain itineraries and then you
stop in certain parts and you think I
would never have considered coming here
had it not been you know somewhere that
we docked. So it is amazing.
And what about that social perspective?
Um yeah, how did you meet your partner
kind of? Um let's talk about that first.
How'd you meet your partner?
So we met on a a dating app, which I
know there's a lot of controversy around
with vision impairment at the moment,
but it was actually quite a positive
experience. So I had just bought my own
house. Um and as I say, I'm one of
seven. So I'd moved out of a very busy
household. And I remember this day I was
sat in my little living room on my own
surrounded by empty cardboard boxes and
it was a Saturday and I thought what do
I do with my life now? It's too quiet
and I was really looking forward to this
stage of just having some peace to
myself. And it was the first weekend in
the house and I thought what am I going
to do? So I downloaded a dating app. Um
and here we are three years later. I had
it for the day. I think he was the first
person I matched with. Um, and he says,
"I saved you from so much misery on the
app." And we're still still together
three years later. So, yeah, it actually
worked out really well. Well, I'm I'm an
online dating um uh advocate as well
because Tammy and I met online um back
in one and um she luckily I was
Australian because she wanted to come to
Australia and so she was looking for
Aussies to chat to and uh and she random
messaged me, you know, didn't only saw
that I was Australian really and then we
started talking and she came over and I
must have been a pretty good tour guide
cuz here we are 24 years later.
A that's amazing.
That's really lovely.
Um,
what else do you think is important um
to talk about? And like I I love that
you continued to, you know, be fit and
out there and um I have to tell you
about the ice skating because I'm very
impressed. I uh took a a date on a on an
ice skating and I'd never been ice
skating before which was my first
mistake uh to take a date out to an ice
skating rink and she was actually quite
a good ice skater and it was the most
humiliating date I've ever been on in my
life. Like hold my hand and we'll go
across the ice. I'm like okay. And I
must have fallen down three times just
going across the ice. It was very I'm
like no more ice skating for me. Wasn't
wasn't a great experience. But, you
know, typically people with blindness
and low vision have poor balance um and
coordination. And so, I'm interested
about ice skating for you. You must be
this rare um person that's come out with
pretty good balance and coordination.
Tell me about that journey.
Yeah. So, I actually I I was quite um
powerful with jumps, but now you
mentioned that I did really struggle
with spins. So, when we span, we have to
be on a certain point on the blade and
remain on that point. And sometimes it
would kind of shift. Um, and I remember
speaking with my coach, my consultant at
the time, and he he did say, "Yes, it
can really kind of impact on your
balance." So, I did feel the impact of
it a little bit, but I just tried to
kind of fight through it as best I can.
But it is a really interesting one
because I found that the more vision I
lost, the more I was very kind of
unsteady on my feet and just
uncoordinated, even just kind of walking
down the street, I would struggle to
walk in a straight line. Um and I would
I would just kind of veer off over to
the side randomly used to think what on
earth is going is going on. Um and then
also my memory as well. My memory became
very much affected but you know as you
know we don't have the visual cues that
cited people do and there are so many
cognitive demands placed on us and
there's only so much capacity that your
short-term memory has. Um so yeah I
realized my my memory was really
impacted as well. So yeah,
and that's that's because like you said,
we just remember everything, right? Um
yeah,
about where we are, landmarks.
Tammy's always like, I don't know how
you remember all of this stuff. I'm
like, well, it's just the way it is.
It's the only way I can get through
life, so I have to have good memory. Um
but how about you TJ? Like how since
diagnosis, um have you seen any like
balance coordination challenges?
Always. I always have issues with that.
Yes. And I do find myself kind of
swaying from
when Lee and I are walking side by side
and, you know, I'm using my cane, but
I'm also holding on to him. Um, it's it
almost felt like he was kind to kind of
tugging on me in a certain, but it was
me drifting. So, it really, you know, I
do struggle with that. And also, closing
my eyes. I find when I wash my hair in
the shower, closing my eyes and le
laying my head back and when I then look
forward, everything's kind of, you know,
gone crazy for a second. Um, I do I
struggle with that as well. And I think,
um, after diagnosis, it like it was
another one of those aha moments where
it all kind of made sense why that I've
always had that issue, you know.
Yeah. Yeah, I think um these are things
that everybody has in different ways,
right, with different conditions and um
it's interesting how they kind of come
out and show themselves. Uh
when um Joe, when you working with
families and and clients um and you said
you've got quite a spectrum of age, um
what kind of commonalities are you
finding? You know, obviously we've got
people listening at home and and
thinking to themselves, well, what's my
situation? and you know what sort of
things do I need to think about in that
environment of making that first step to
kind of come to terms with and change
what I'm going to do um to prepare. Are
there things that you think are really
important to think about?
Yes. I think the main theme that I've
realized after being in this role for 5
years and it it's it's strange how it
changes your perspective on vision
impairment even though you know I've
lived with it for 31 years and when I
watch other people going through it it's
it's not a one-sizefits-all. Everybody's
experiences are so so different. But the
one thing I've came to realize is that
until you've gotten to a level of
psychological acceptance, there is no
level of practical rehabilitation that
can ever help you. Because until you
feel ready to help yourself and that
you're in a mindset in a headsp space
where you can move forward and you know
you're ready to accept that support
until you've accepted the fact that you
do have this level of sight loss and
that it is permanent and that's not
going to be cured and until you are at
peace with that that is then the point
that you can you know start with
rehabilitation training and start to
learn to use a long white cane and you
know have aids in the kitchen and have
kind of these aspects of support in
place that are going to enable you to
move forward and live independently. And
I always say to people, you know, sight
loss isn't essential. It's just
convenient and it's not necessarily the
end of the road. It's just a different
way of living. And it can take every
person a completely different time frame
to kind of relearn how to live and to,
you know, relearn how to do the basic
things in life. But once you do that and
you know once you start to practice
these things every day, it starts to
feel like a new normal and you will get
to a point where you sort of forget how
you managed previously with with more
vision. And once it starts to feel like
the new normal, you you can then just
kind of settle and move forward. And
obviously we always have our down days.
Um but I think it it can get to a point
where you have more good days than bad.
And I think if you get to that point,
then you you're winning in life.
Yeah. There's no I think you're right
on. There's no um quick fix or or you
know super thing that you're going to do
that's going to completely make
everything okay. Um and it's it's
utilizing that toolbox that we've talked
about you know a lot um where you just
have things that can make life easier at
different points that that helps on a
day-to-day basis. One thing that I did
want to talk to you about Joe was the
app that you were using and I think the
UK does a really great job um with
disability holistically. um and how you
look at disability. And um you did a
post uh on your Tik Tok page um a couple
weeks ago about this app. Um and I I
just love it and would love to see it
come to the United States. Um can you
tell us a little bit about that?
Yeah, so this has been produced by it's
an AI agent and it's being produced by a
company called Visually Sonic. So the AI
agent itself is called visually sonic
sense and essentially it was developed
in with businesses and public venues in
mind so that not just people with vision
impairment but any individual with a
disability or with an accessibility need
can essentially call a helpline in
advance of attending a public venue and
ask it questions around the
accessibility of the venue. So, it can
let you know, for example, whether or
not the venue is step free. Um, what the
lighting levels are like, whether or not
there's an accessible toilet. It can
even explain whereabouts in the venue
the accessible toilet is. It can
escalate you to a member of staff if you
need any further information or, you
know, you need kind of human
interaction. It's the agent is 24/7. So,
you could call it at 3:00 a.m. on the
way to the airport and ask about the
accessibility of the airport that you're
traveling with. It's an amazing amazing
tool and I have been working with the
business for about 12 months now. So I
tested the accessibility of the product
when they were kind of in the testing
phase. Um and then obviously it's very
recently launched, hence the the video
that you saw on Tik Tok and we're now
just kind of waiting for it to be rolled
out further. So it's dependent on
individual businesses picking it up
really. Um and hopefully, you know, we
we see it rolled out across across more
venues moving forward. It's extremely
exciting.
Yeah, I think um just hearing the call
and hearing the agent and the
information that you were getting is so
valuable and I know that more and more
when I'm traveling somewhere, I'm doing
the research now. You know, I just went
to the US Open tennis in New York last
year and I got on YouTube and I looked
at the route on the train from um uh
Time Square out to um the tennis and
which stop I'd have to hover. I had
someone uh show me basically on a video
when you enter Penn Station in sorry
when you enter um Time Square station in
this way, you go down the stairs, you
walk this way to the platform to catch
the train. So, I was really familiar
with basically what I had to do and it
just made life so much easier than
turning up and trying to figure it out.
And so, um I'd love to see that app
transition um to other parts of the
world like the United States.
Yeah, absolutely. It is absolutely
fantastic. I I just think it will settle
people's minds because as you say, you
know, we we have this tendency to, you
know, try to research a venue as much as
we possibly can in order to determine
the accessibility of it in advance. And
this is just something that you you have
at your fingertips and if venues are on
board with it, you you can gain that
information any time of the day. And
it's highly detailed as well. I mean
often you you'll call a venue and you'll
be passed from person to person and
quite often they don't have the answers
right
but yeah this is absolutely fantastic
and I am super excited for it to be
rolled out further
well keep us up to date about that and
if they a trial here in the United
States I'm on board to to help them get
it
yes same
I think um it also talks about um you
know the ignorance that exists in
mainstream um it helps break down that
right because if you talking to a venue
about accessibility, then it's front of
mind and they start to think, okay, if
more if a lot of people start to show up
with blindness and low vision or, you
know, some other form of disability that
there's a there's a big market out
there, you know, especially for
restaurants as an example where people
do want to go out, they do want to be in
a social setting, but there's there's
challenges.
Yeah, absolutely. and that there are so
many barriers to accessibility and those
barriers could be the difference between
whether a person attends a venue or
whether they decide to stay at home. Um,
so to be able to access that
information, you know, for it to be kind
of readily available and I think the
privacy element of it as well because
you don't have to speak to another
human. Like I'm quite confident nowadays
if I need to find out accessibility
information, I can happily ring. But not
everybody is at the point in the journey
that I am. And if you'd have asked me
that question 10 years ago, there is not
a chance that I would have spoken to
another human or I wouldn't have been
able to plug up the courage to ring and
say, "Do you have an accessible toilet
or you know, is there enough space for
my guide dog?" I wouldn't have dreamt of
it. I'd have rather stayed home and
depending on which point you are at in
your journey. There'll be a lot of
people who are at that stage. Um, so the
thought of being able to just contact an
AI agent where you don't have to share
and disclose personal information with
with another human, I think that's a
that's a great element of it as well.
And you got a lot of um feedback from
your video about your guide dog um in
the restaurant and and being carded um
that I saw. And so I I think this is
such a common problem, you know,
certainly here with Ubers and lifts. Um
it's a massive problem with guide dogs.
Uh and then in restaurants and I think
because now there's a lot of service
animals um uh coming into play
everywhere you are. Um that need for
carding and and things like that has
kind of taken place because of the
prevalence of service animals broadly.
um when it used to just be guide dogs, I
think that it wasn't maybe as bad, but
now um you know, people are kind of
wanting to make sure um that it's a
registered um service animal. And so I'm
interested in your your take on that and
then um what you think might be some
solutions or or things that have been
tried in the UK that you know maybe
people don't know about here in in the
United States.
Yeah, it's a it's a really interesting
point and a real prevalent problem at
the moment. So, um, basically what
you're referring to is I recently had an
access refusal at a very popular pub
chain here in the UK. Um, and prior to
this access refusal, I had never had a
problem with this pub chain, the staff
couldn't have been more supportive. You
know, I would walk in and if the tables
were tightly packed together, they would
move furniture. They would offer my
guide dog bowls of water. They were
amazed. And funnily enough, I was having
a conversation with a visually impaired
friend a couple of weeks back um who's
recently qualified with her guide dog
and she said, "Oh, I'm really
apprehensive about attending this
particular pub because I've heard really
negative feedback from guide dog owners
with kind of access refusals." So I
said, "Well, that's really strange
because I I've always had a positive
experience." Um now I've been
hibernating in my home for about 5
months because of my spinal fracture. So
I'm just starting to get out and about
now. And as it happened on this
particular day, me and my partner were
going to work my guide dog in harness
for the first time in five months. And
on route, we said, "Oh, should we pop in
here and grab some breakfast?" So, we
did. Um, not expecting any problems at
all because I've never had a problem in
this particular place. And the employee
had approached and she asked for a
registration card. And initially I
didn't really know what she was
referring to because I've been a guide
dog owner for 14 years, never been asked
to provide proof or evidence of the fact
that she is a working dog.
Yeah.
So I told her that I didn't have it with
me and she said, "Well, we need it. It's
our policy." And I said, "Not really. It
conflicts with the Equality Act. You
know, she's she's got a full Guide Dogs
UK working harness on. It's fluorescent.
It's it's got nationally recognized
logos on it. There was a correspondent
flash on her lead. there was a a bold
large print sign on a harness to say,
"I'm a working guide dog. Please do not
distract me." And I said, "Is is that
not enough for you?" And she said,
"Well, I'm just going by our policy."
And I was like, "But it's not right.
I've never needed to provide that
information." So, cut a long story
short, I did a lot of research after I
left and realized that they have
implemented a new policy change which
came into effect in June last year
whereby they are requesting proof of
assistance dogs um that have been
accredited with ADUK, which is
assistance dogs UK. So, you need to
carry the booklet in order for you to
for them to allow you in. On the one
hand, I can see why they're trying to
police this because I am the the first
person who doesn't want a fake service
dog, if you like, um, at the next table
because to my guide dog, that is a
distraction and if she's not working, I
can't see.
So, it is a problem. I recognize it as a
problem. I have experienced it
firsthand. However, I don't feel like we
should be tarnished with the same brush.
Um, you know, as you say, guide dogs
have been they're one of the OG
assistance dogs. And it's very blatant
by one, the fact I'm visually impaired.
You know, I struggled walking into that
restaurant. It was difficult for me to
navigate through tables. My partner
pulled the chair out for me. I was in
the middle of trying to connect my meta
glasses to the app to access the menu,
which I can't see. As the woman
approached, she had a fluorescent
nationally recognized harness on from,
you know, the leading assistance dog
charity in the UK. And her her behavior
was impeccable. And she's a yellow lab.
So, you know, you've had all of these
things up. And I just think at some
point some common sense must come into
play. Um, and to kind of just judge the
situation at the time, but to put down
in paper that you must, you know, demand
proof. There were people I think that
particular video is at about 850,000
views at the moment and there's so many
people with a variety of disabilities
commenting on it. I even had a lot of
wheelchair users commenting on it
saying, "Imagine if we entered and were
asked for evidence of our need to use a
wheelchair,
you know, and it it was kind of
it's
demeaning."
Yeah, absolutely. Um it it was
humiliating. It was quite embarrassing.
It it was the way it was approached as
well. you know, had the member of staff
pulled the chair out opposite me and
just said, "Look, I really hate to ask,
but we have been asked to do this as
part of our new policy and I could have,
you know, gone away and, you know, had
some conversations with Guide Dogs UK,
but she was stood over me and, you know,
she was she was pretty loud and
everybody was watching around us and
right,
it's just it's very difficult because I
think as a guide dog owner, you know, I
don't walk in there thinking
this is me and I've got my dog with me
because to me when we're working she
she's not a dog. She's an extension of
me. She's my eyes. So if somebody has a
problem with that, I don't perceive it
as they probably be thinking the head or
there's a dog here. That's a problem. I
think I've got a disability and that is
the problem because I I don't kind of
see us as separate entities if that
makes sense.
We we come as a package deal and if
she's not there I can't be there. So it
is it it does really hurt, you know, to
to be asked for evidence. And I I think
as well on top of that, you know, to
feel the need that you've got to prove
yourself and prove your disability and
prove your need for an assistance dog to
be by your side constantly, it's
emotionally exhausting.
Yes.
Yeah. 100%. I think that uh you know
that have you gone back to guide dogs at
all um or assistance dogs UK and talked
about this?
Yeah. So I did report it to guide dogs
UK. They are extremely supportive and
they have helped to to guide me through
the process. I did log a formal
complaint internally with the pub chain.
They have came back, reiterated their
policy, apologized for any upset and I
have a meeting with their area manager
on Tuesday. um my partner and I have
also signed up an online petition for
the policy to be revised um moving
forward just because of the number of
people who it's affecting. And I think
this is what's kind of put fire in my
bones is that it's not it's not just an
isolated incident. It's it's not just
myself that this has happened to. There
are so many assistance dog owners,
genuine assistance dog owners who need
their dog by the side to even leave the
house on a morning who have had the same
experience. And I just think this has
been ongoing for 12 months and nothing's
being done about it. Um, and I just
think how many more people are are going
to be affected by it.
Yeah, that's great that you've taken
that stand because I think a lot of
people to your point um don't want the
attention, don't want to deal with it,
are still struggling with themselves. So
advocacy is hard, but you you have to
make those stands. You know, I went into
a restaurant a few weeks back and um
after I had a torn labroom in my hip and
then I had the surgery and so I was on
crutches and I walked up the ramp
entrance cuz they have a stair entrance
and a ramp entrance on either side of
the restaurant. And when I get to the
top of the ramp, it says handicapped
entrance. And I just said, you know, the
wording here is really like offensive to
me. I said it could be called accessible
entrance or you know something like
that. It's it's important to understand
the connotations of what a sign says and
um you know they changed the sign but if
I had never said anything that sign of
of handicapped entrance would still be
there and so it's important to be able
to know your rights one and then be able
to advocate for yourself too um when
things offend you or you feel like
they're they're not appropriate um to
what your circumstance is.
Yeah, absolutely. I mean, I think I
think over the years you build up a lot
of resilience, don't you? And there are
there's a lot that you go through and at
the time it feels like such a a negative
experience and such a setback. But each
of these things are kind of another
building block to the resilience that we
build over time. And it's got to a point
now where I um I I no longer get
emotionally upset in the moment over
these things because I feel like I've
desensitized to it because I'm so used
to them happening, which is sad in the
one on one hand, but on the other hand,
I've got to a point where it it kind of
motivates me to to want to do more
because there are a lot of people in my
position with the level of vision that I
have who are either, you know, still in
that earlier stage of adjusting and
accepting And I think when you're in
that space emotionally, it's very
difficult to to stand up because I've
been there. So, so I know. Um, and
there's also other people who, you know,
they might have a learning disability or
a communication barrier in addition to
the vision impairment. So, there's so
many of us amongst our community who
don't have the ability to stand up and
advocate for themselves. So, I think if
you are in a position to and you feel
comfortable to, you know, take take a
stand for us all. And six months ago, I
wouldn't have been able to do that
because I I was was very low myself with
something else that was going on in
life. And having the experience that I
had last week in in the pub would have
knocked me for six and I would have
walked out crying and I just wouldn't
have been in the head space to tackle it
in the way that I am now. So I think it
just depends on,
you know, your mindset at the time and
yeah, 100%.
Life happens, right? It can
you in the butt or, you know, it can
give you opportunities. Uh so I think we
all go through those for sure. Medical
medical stuff is a challenge uh by
itself and I think going through your
fracture in your back and and having
that isolation for a long time is its
own issue right apart from the vision.
Yeah. Yeah. It's been complex.
Thankfully I'm at the a place now where
I can kind of get myself back out there.
And I think this has probably given me
the kick that I need. Unfortunately, it
was my very first day
just being with
being with my dog in harness again. But
yeah, it's motivated me to,
you know, get get back on track and get
back out there. So,
awesome. Great advocate. So, I'm sure
people are thankful for that. TJ, any
final question for Joe?
I don't think so. We've covered so much
and I I just I thank you so much for all
of this information and um I'm looking
forward to all the things to come from
you. Um, I I would I do want to know
more about the app and accessibility for
here. I know I was like Murray said, I
went to New York last week actually and
found myself prior to going ahead and my
Citymapper app and putting in all the
places that I knew that I wanted to go
and making sure that I mapped that out
prior to us getting there. just, you
know, and by the time you get there,
it's almost like you're exhausted from
doing all the research and then you got
all the everything's in your mind and
it's, you know, it's like, okay, well,
where was this again? Where was that
again? So, you know, it's overwhelming.
So, I I love that something like that is
is happening over there. So, keep us
posted on that.
Yeah, absolutely. I definitely will. It
can be very exhausting and I think
something like this will just make the
world of difference for us all.
For sure.
Any final comments from you, Joe?
anything that you'd like to talk about
that we haven't covered?
Um,
not that I can think of.
Well, we've covered a lot.
So, everyone knows your your story
inside out now, so I'm prepared to get
bombarded by messages and uh questions.
Yeah. I mean, what one one thing I will
say is I've had a lot of messages from
visually impaired people recently who
want to get started with content
creation on social media. Um, and just
don't feel like they have the courage
to. But one thing I would say is that if
it is a route that you want to go down,
just record your first video and get out
there because that is half of the
battle. Um, and I know there's so many
people who want to get on board with it.
And for me, I think the more of us that
we have representing and advocating for
the community, the better. Um, so if
there is anybody watching who, you know,
has had that in the back of their mind
for a while, I hummed and hard about it
for almost 10 years. And it wasn't until
my first guide dog passed away and I
thought, "Oh, what have I got to lose
now?" But that's when I started to kind
of document my journey. Um, so yeah, I
think if anybody's wanting to go down
that route, just get your first video
out and it becomes easier.
And it doesn't have to be perfect,
right? is we've all kind of made that
decision to do our first video and
you know want to make it perfect and
spend hours on it but it's it doesn't
have to be that you know it's just
people like to hear from people and
getting yourself out there and building
that community has been great you know
for for everybody in it everybody who I
talked to said you know a lot of people
said they've never met somebody else
with blindness or low vision they've
been in isolation you know since their
diagnosis and it's been so freeing and
so again this podcast hopes to be able
to reach and tell stories that make
people feel like it's not as big a deal
to do things in their lives as they've
built it up to be. So, uh, your your
advice is really empowering. Just get
out there and and do it and doesn't have
to be perfect. And same with tennis. You
know, I say to people all the time,
they're intimidated to play blind low
vision tennis. And I say it's fun. You
know, just get out and hit a ball. Like,
it doesn't have to be that you're
Wimbledon's number one player. It's
that, you know, you're getting out in a
social setting. you're meeting people um
with the same challenges as you have and
you're having fun doing something that
is also healthy and and recreational. So
like don't put a barrier all the time we
put barriers in front of ourselves not
to do things but uh when we do them nine
times out of 10 they're great
experiences.
Exactly.
Yeah. Absolutely. I think it's just not
worrying about kind of other people's
perceptions and just doing, you know,
what what you've always wanted to re
really. And every time I see a new
creator pop up with their first video,
I'm like, oh my word, this is exciting.
Because I think that the more of us, the
marrier. And there's the odd person
who's messaged me and they're like, I
don't. I'm like, just do it. Please,
just do it. And then they message me and
they're like, I did it. And then I go
watch the video and I'm like, oh my
word, another one. That's amazing.
So yeah, just get yourselves out there.
Yeah. Get out and do it, people. Well,
good message for um and Joe, thanks so
much for being our first international
guest. It's been so great to be able to
um hear your story and um hear the
things that you've been able to achieve
in your life. You should be very proud
of your journey. Um, and we hope to be
able to close the gap around the world
and um, and have more of the
international community uh, come on the
podcast because I think it's great to be
able to share what's working in one
region of the world against another
region of the world and as we've done
today, understand what some of those
opportunities are to be able to grow.
Yeah. Oh, thank you so much. And also,
thank you for having me. Honestly, it's
been it's been an absolute pleasure. I
really enjoyed it.
Awesome. Well, uh, TJ, um,
y
you, uh, your your New York trip didn't
maybe go as well as planned. Your, your
star player went on the DL the day that
it never f never fails. Yankee Stadium
went to, so we're hoping for better
travel for you in the future.
Yes. I'm not going to go back to Yankee
Stadium, though. I'm I'm the bad luck
charm, apparently. So, I'm going to stay
away because then two years ago,
Erin Judge went on the IIEL before I got
there and this time he went the day that
I got there. So,
no more trips for you.
No more. I'm just bad luck, I guess. So,
well, of course, the World Cup is
happening. Uh, good luck to England.
Good luck. America played very well last
night, won 4-1. So, that was a good
start for them. Australia plays today.
So, excited to tackle to the So, we'll
see how we all go in the World Cup. Um
Joe, thank you again. We really
appreciate coming on and um this episode
will be up on Tuesday. Um usually we get
it up the same day, but um my team is on
vacation. my um content creator just
graduated and so um they're taking the
the weekend off, but we'll um we'll put
this up on Tuesday and then we'll be
able to put it out to everybody once it
comes up through the QR codes and of
course going to the Ammerbility Podcast
YouTube channel um to be able to see it,
iTunes and Spotify to listen to it. Um
thank you again everybody. Have a lovely
weekend and we'll be in touch on episode
14.
Bye bye.
I can do anything. I know I belong. This
is my moment. I'm proving it all.
I'm pro.
I know I belong.
This is
it.
Great job, guys. Let's do it again.