April 28, 2025 • 21 mins
In this episode of the We Are PoWEr Podcast, we sit down with Jo Milne, founder of Cure Usher Syndrome, to talk about her mission to find a cure and amplify the voices of those living with Usher syndrome.
Jo shares her personal experience of being misdiagnosed, only to learn at 29 that she had been living with the condition all along. As someone who grew up partially sighted without a role model to look up to, she is now determined to be that person for others—empowering more people to speak up and embrace their identity.
Beyond her work as a mother and advocate, Jo discusses the power of support, from the people who helped her build confidence to her partner, who encouraged her to fully embrace who she is.
This conversation is a powerful reminder of the impact of community, resilience, and using your voice to drive change.
Find out more about We Are PoWEr here. 💫
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Episode Transcript
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Speaker 1 (00:00):
Hello, hello and welcome to the we Are Power
podcast.
If this is your first time here, the we Are Power podcast is
the podcast for you, your careerand your life.
We release an episode everysingle Monday with listeners in
over 60 countries worldwide,where you'll hear personal life
stories, top-notch industryadvice and key leadership
insight from amazing role models.
(00:21):
As we Are Power is the umbrellabrand to Northern Power Women
Awards, which celebrateshundreds of female role models
and advocates every year.
This is where you can hearstories from all of our awards
alumni and stay up to date witheverything.
Mpw Awards and we Are Power.
I am delighted and thrilled tobe joined by.
(00:50):
I think we talk about inspiringand inspirational so often, but
today I'm being joined by thewonderful Jo Milne, who is
actually YouTube sensation.
Was it 12 million?
Speaker 2 (01:02):
It was 12 million, and it was 10 years ago.
It's just amazing how 10 yearscan just be over in a flash.
Speaker 1 (01:10):
yeah, and you are so accomplished in what you do not
done.
It's not past tense what you doand what you drive.
How would you describe what youdo in?
I was going to say three words,but I think that's absolutely
impossible, so why don't we trya sentence or two?
Speaker 2 (01:29):
Jo, there's a lot to talk about.
I think my story justhighlights that everybody does
have a story and for me that'spart of my story that I'm
particularly very nice and it'sall about the lack of awareness
of the condition that I livewith Usher syndrome.
To just put it very quickly 16years old I was told that I had
(01:53):
Usher syndrome.
Usher syndrome is the leadingcause of genetically inherited
combined deafness and blindness.
When I was in my 20s I was toldthat I didn't have it and then
it was confirmed when I was 29that I did have it.
But the actual diagnosisbecause it's three types of
Usher one, two and three and thedifference is just the age of
(02:14):
onset and the progressivenessand the type of Usher that I was
told I had I didn't have.
I had a type one diagnosis,which means that I've actually
been part and parcel since I wasa child.
So I've lived a life.
I mean, I'm a mum to twochildren and I can just try to
put myself in that position as amum.
(02:34):
What it must have been like formy mum to find out that a
profoundly deaf daughter wasactually going to be losing her
sight.
So it's been like a lifetime of.
It's been like the unknown.
We've been very unsure.
It's been about the lack ofawareness.
Nobody knows what to expect and, most of all, there hasn't been
(02:55):
any positive representation.
There was nobody like me.
You know what.
There was nowhere to turn to,there was nobody I could look up
to.
So that's basically my life, ina nutshell, where I'm trying to
change this.
Now.
I'm trying to change this sothat people do know Russia, by
(03:15):
raising awareness and hopefullyto empower more people to speak
up about their condition.
Speaker 1 (03:22):
And it's easy, isn't it, for the media, for the
health service to labelsomething?
Yeah, it's a degenerative eyeand hearing condition, but we
can't just label things likethat.
Speaker 2 (03:35):
Yeah, I think there's just a lot of, I would say,
uncomfortable about disability.
I think we need to normalisethe conversations around
disability, because disabilityis a huge part in everybody's
life.
I mean, one in four of us havea disability.
You can have a short-termdisability, you know, like if
(03:56):
you look around our lives, therewill be somebody that will love
, somebody that will know thathas a disability.
And I just think sometimes wecan be in danger of trying to
label people too much, becausethere's not too much effort in
just having empathy and kindness, because it's not about what
you can do, it's about what youcan do, and I think that goes
(04:17):
right across the whole board ofdiversity.
We're all different and thatshould be celebrated, shouldn't
it?
Speaker 1 (04:23):
100%.
You're a true role model and Ithink, by choosing to be visible
because you could have notchosen to be visible, but you've
chosen to say you know what.
I've lived with this.
I've done this for my family,because you talked about your
mum, you know.
But by you talking and creatingthe following and Who'd have
(04:44):
thought 10 years ago, 12 millionpeople would have watched your
YouTube clip, which was when yougot your cochlear implants,
wasn't it?
Vitted, yeah.
Speaker 2 (04:54):
That's it, because the story behind the cochlear
implant, a lot of people didn'trealise that it was actually
because I'm losing my sight.
So it was like I was losing onesense and I'm losing my sight.
So it was like sort of I waslosing one sense and I'm trying
to gain another.
And that's why that video wasso emotional and so powerful,
because it was just like thankyou.
I felt very cut off, very cutoff from the world, because I've
(05:19):
always said there's nothingwrong with deafness, there's
nothing wrong with blindness.
That can be celebrated.
It's when the two come together.
That's when it's very, verychallenging and it can be very
disabling.
It can be very.
It makes life, can be quiterestrictive.
So you really have to try toempower that and I think by the
cochlear implant that was one ofthe first moves I made to try
(05:43):
to improve the quality of mylife.
And well, wow, the reaction toit was.
Speaker 1 (05:48):
And you became a global spokesperson and voice of
Usher within a short period oftime.
That must have been quiteoverwhelming, yeah it was very
overwhelming.
Speaker 2 (06:00):
I was just thrust on a global platform and I think
that's when I realised there wasa certain sense of
responsibility.
People were listening and itwas placed upon me to share my
story, because how would peopleknow, how would people learn
about that if you don't speak up?
(06:20):
And I think once I started tospeak up, it was like the wheel
became in motion for theawareness raising and a lot had
happened in the last 10 years.
I would like to think thatthere is more awareness
diversity syndrome happening nowand what would you shout out
there if you could have thatmagic wand?
Speaker 1 (06:38):
what would you ask for now, because you can have
more than one ask, but let's themagic one.
Speaker 2 (06:45):
Well, I founded a charity in 2018 Cure Usher
Syndrome and the words say itall.
Now it's not unrealisticexpectation for a cure for Usher
Syndrome.
It goes back to the lack ofawareness.
The lack of awareness meansthat we'll have lack of funding
and by speaking up, carrying onwhat we're doing that is my way
(07:08):
so that there's a cure for Ushersyndrome and, meanwhile, just
more awareness, more awarenessof the condition.
Now, when we talk about Ushersyndrome, there is at least
11,000 people in the UK livewith Usher syndrome.
Now, that's like the number isvery similar to cystic fibrosis,
for an example.
Now, 11,000 people.
(07:28):
Cystic fibrosis.
Everybody knows what it is,just like the basics of what the
condition is.
It's rare, but it's not thatrare.
You know somebody of thecondition and that is what I
would like, if I'm having twowishes here that it becomes a
global effort that people knowwhat Usher syndrome.
For an example, I have amobility cane with a red stripe
(07:51):
and it is saying for a guide dog.
A guide dog can have a red andwhite checkered harness and one
with a mobility cane.
The red stripe signifies thatwe have a hearing loss too.
So even just to get that intothe public domain of awareness
raising would be fantastic.
Speaker 1 (08:09):
Oh, and it's been recently.
Usher Syndrome's recently beenin soap opera, hasn't it?
Yes, it has, yeah, InEastEnders.
Speaker 2 (08:16):
Yes, it was featured in a storyline on EastEnders and
that was just one of the mostincredible things that could
have happened in TV and media,because when you've got just a
massive audience, we're talkingabout, millions of people are
hearing the words SE syndrome,and not just that.
I think it gives that feelingthat you're not alone, that
(08:39):
there's a community out there.
There's a lot of people outthere individuals, families.
We're all living our lives andjust to get them words out there
, it's like yes we're here we'repart of the world too.
Speaker 1 (08:52):
And for people that are interested and passionate
and driven and motivated by yourdrive and your inspiration.
What can individuals getinvolved in?
Absolutely need funding,absolutely need awareness, but
how can people get involved?
Speaker 2 (09:08):
Well, I would like to think that people could get
involved with maybe likefundraising efforts as well,
because it's all about thefunding People just got behind,
I think like a nationwide effort.
I mean, in June I'm going to bethis is one of these bonkers
things that we're doing forfundraising.
It's like why?
(09:28):
Why do we do it?
But this is what you do, youset yourself a silence.
But in June I'm going to bedoing Scarfell Pike, but this is
during the night, so we set offabout midnight and we get to
the top of the mountain to seethe sunrise and there's like a
wonderful metaphor behind it andit'll be quite moving.
It will be extremely silentthere and for me it would be
(09:52):
great if everybody could getbehind me, even just give a few
pounds, the price of a cup ofcoffee, If somebody could just
help me with that, that would beincredible too and it would
give a lot of hope to familiesand individuals out there.
Well, we will put the details inthe notes that go along with it
.
Speaker 1 (10:09):
Now you said bonkers.
Now I've heard you on a fewpodcasts.
I've heard you are a mediaspokesperson out there for
Curaçao and for disability.
What's the most bonkers thingthat you've done?
Because I've heard you use thatword a few times.
Speaker 2 (10:24):
Oh, bonkers, I think when the story just got thrust
into a global platform, it waslike people were doing songs,
people were talking.
I even had a song written forme and this was an Irish band
called Take your Sweet Time, andif you listen to that song,
(10:47):
that song is those moments thateven some quotes about what the
audiologist was actually sayingto me.
So that was very, very moving.
But it was just like the travelthat was involved as well.
I was in Japan and I wasapproached by the Oden family,
which is a singing Oden family,because they're touched by
(11:09):
deafness as well, and we wereinvited out of Bangladesh and,
with generous sponsors, we wereable to provide 500 pads of
hearing aids to like children inBangladesh and just the
opportunities that they weregiven was absolutely incredible.
And it did actually win aNational Television Award for
(11:30):
the best factual documentary.
And I think what was soemotional about that documentary
is that it captured thosemoments, the same kind of
moments that when my video wentviral, and it's just those first
few seconds of experiencingsound and it's just, it's just
incredible and I've got two bitsI want to pick up on there,
(11:51):
because one thing is I know youwere an ambassador for deaf
children, aren't you?
Speaker 1 (11:55):
because obviously you haven't got enough to do with
running your own charity, beinga spokesperson, being a role
model, but that's that's reallyimportant, because that's all
about leading, about changingperceptions, isn't it of that
hidden disability which wetalked about right at the start?
You can't see every disability.
Speaker 2 (12:11):
That's right.
I think there's a lot to besaid.
Like I said before, I thinkdisability should just be them
confiscating to be the norm,because there's a lot of
invisible disability.
Some people don't want todisclose their disability, and
that's absolutely fine as well.
It's not just all about whatyou can say.
For an example, my mobilitycane.
(12:32):
Some people like to keep thingsprivate.
You know, like people shouldn'thave to disclose their
disability if they don't want to.
That is why it's just aboutpeople.
It's just we're all people andwe all have our differences.
And that's just about people.
It's just we're all people andwe all have our differences and
that should be celebrated.
And I'm also very passionatewith, like the best hearing
healthcare.
It's like I said, there'snothing wrong with being there.
(12:55):
It's when you're losing yoursight.
We need to discuss the optionsthat are available, whether it's
better hearing aids, cochlearimplants, etc.
Etc.
So we're just trying to takecontrol.
I think we all have a certainresponsibility within ourselves
to try to make the best of ourlives.
(13:15):
You know just what can I do tomake this better.
If you're not happy aboutsomething, or if you feel like
you're struggling, talk tosomebody.
In my case, it was like I'mreally struggling with
communicating, and that's why Idecided to have a cochlear
implant.
Speaker 1 (13:31):
And you mentioned before the Take your Sweet Time,
which was a song that waswritten, wasn't it for the video
?
But I know your friends made aplaylist, didn't they?
For you, do you have afavourite song on there?
Was that like picking yourfavourite friend?
Speaker 2 (13:49):
I think for me, because, like the playlist,
there was 40 songs and it waspresented to BBC Radio 6 and
Lauren Le Verne and what it wasit was like it was the build-up
to restriction for the cochlearimplant.
It was like all the six musiclisteners were waiting to see if
it would be successful, becausethe way the conversation was
(14:13):
going it was when Joe's implantgets switched on, there's a
possibility that you may hearmusic.
So I think it just got thenation talking about well, what
song, what song would you choosefor someone?
So that's why I decided to picka song from every year of my
life, so it had like asignificance of the year.
So for the one that stuck outfor me was because it was the
(14:35):
first one that was played to meand it was elbowed one day, like
this and it's just a bit whereyou get the violin playing and
just the head on my arm to standup.
every time I hear that song,yeah, wow.
Speaker 1 (14:49):
And you've got a young family and then, of course
, you've got Super Steve, right?
Yeah, I do.
Now Super Steve is here.
He's feeling all awkward andshy because he's that kind of
guy, but we met Steve a fewweeks ago when you obviously
came along as finalist andfuture list at the 9th Northern
Power Women Awards.
It was glorious to see you andto chat with you, but he's a
(15:14):
good guy, right?
Speaker 2 (15:14):
Yeah, he's a good guy and I think for me I'm a little
bit late to the party.
You know, we've got like youngchildren my parents are starting
to be, all my friends arestarting to be, or my friends
are starting to becomegrandparents and vice versa.
But I think a lot of it was todo with my personal journey.
I think one I'd accepted that Ihad this diagnosis.
(15:38):
I think it's like I started tobuild my confidence.
I began to say how can youexpect someone to love you if
you don't love yourself?
And I think that for me it waslike I built my confidence.
And then bingo, there he was.
It was very much the eyesacross the crowded room when I
met Steve.
(15:59):
And Steve had always encouragedme to be myself, to embrace even
my cane.
He'd always said you knowwhere's your cane?
Get out your cane, use yourcane.
It's part of you.
So I'm very lucky to have apartner that didn't want me to
hide my disability.
He wants me to embrace it and,like I said, hopefully it's just
become the norm and the canedoesn't stand out as much
(16:22):
because it's just like a part ofme.
And yes, we were married withina few years and we'll have two
beautiful children who are fiveand seven years old.
Five and seven.
Speaker 1 (16:34):
And I know sort of taking back into sort of the
challenges around Usher syndrome.
I know one of the things that Iheard you and Steve on a
podcast, because obviouslyyou've got a take in with you
sometimes on the pod, you know,have his voice heard.
But one of the things I heardis when when I think it was
during your second child,because the shifts will change
yeah, there's, there's there's akind of rebriefing of
(16:55):
information because of the lackof awareness of Usher yeah but
having Steve there the wholetime was critical because
otherwise you would have lostsome of that communication just
purely through lack ofunderstanding and awareness of
Usher right.
Speaker 2 (17:09):
Yeah, now, steve's background is that Steve was a
rapid response paramedic, soSteve was very used to the
healthcare setting and I wouldsay just the whole experience of
giving birth to my children.
It was a beautiful moment,don't get me wrong, but it could
have been more beautiful if Ididn't have to self-advocate and
explain about my condition andSteve tried his best too to
(17:34):
explain that and I think it's alife lived for me.
Now I think I've been put in alot of different scenarios and
situations that I can understandabout the lack of awareness and
, I think, the experience ofbecoming a mum twice.
I think that was when it wasthe final straw and it was like
we need to do something about itand my ultimate I would say my
(17:58):
ultimate drive to find this outyeah, and you talk about that
self-advocacy piece, things thatat the start really it would
have been.
Speaker 1 (18:08):
Would it been simpler to to not and just gone?
Yeah, and other people will dothat.
Absolutely.
What made you the the other?
Speaker 2 (18:15):
I think for me um, again, it's just because I've
become a mum.
The state children are watchingyou all the time.
You know, I can see itparticularly in my daughter.
She's only five years old.
She's watching every singlething I do, every move that I
make, and she's my go-to becauseI know she's watching me.
(18:36):
So, for an example, having amum with a zero sensory load,
it's very normal to her.
You know, like in a normal dayday we live, we laugh, we love,
we learn, we do all those things.
So if all of a sudden I startdoing something different, it
wouldn't make sense to her,because that's the very thing
(18:56):
you know, like, just try.
I think looking at the worldthrough a child's eyes is very,
very important.
I think that's the point I'mtrying to make is watching you.
So it's a bit like you liveyour life.
But if the world is watchingyou and that's how I believe to
be living my life now throughthe eyes of my children- what do
(19:17):
you think your superpower is?
Speaker 1 (19:19):
My superpower, yeah, and you've probably got more
than one of those, more than onewish, more than one of those
More than one wish, more thanone superpower, superpower.
Speaker 2 (19:27):
I think that people in my life might say a very
different thing, but I think,for me, the resilience, I think
I believe that, well, I could goback to maybe some of my
grandparents' quotes where theysay you know, where there is
life, there is hope, and Ialways think as long as we've
got well, we're healthy.
(19:48):
Also, that might becontradictory to what I advocate
, for I do have my health.
I'm very lucky to be happy andhealthy, but never give up, keep
going.
Speaker 1 (20:02):
And what is next for you?
Because you're not not stoppingany time soon, are you?
It's the North East genes.
I know that.
Yeah, I think now.
Speaker 2 (20:10):
If you had asked me this last year I would have
thought things were settlingdown, but I think I've realised
things are only getting started.
There's been like a lot ofinterest in my life story.
I think people want to knowmore and I think I have that
passion to carry on because Ican see the difference that it
makes when I'm on it.
(20:30):
Sometimes it's not nice andsometimes it's empowering and
it's positive, but it makes abig difference when people know
what to expect.
And again, it's just raisingawareness and not feeling so
alone.
Speaker 1 (20:44):
And again, it's just raising awareness and not
feeling so alone.
Jo Milne, your spirit, yourcan-do attitude, I love that.
It's all about what you can doas opposed to what you can't do
Life for living, simone, andyour vibe is absolutely glorious
.
Thank you for being a superNorthern Power women and a true
inspiration, and a big high fiveto Team Steve over there and
(21:05):
the kids as well.
Thank you so much for joiningus today.
Thank you, subscribe on YouTube, apple, amazon Music, spotify
or wherever you get yourpodcasts.
Leave us a review or follow uson socials.
We are Power underscore net onInsta, tiktok and Twitter, or we
Are Power on LinkedIn.
Hello, hello and welcome to the we Are Power
podcast.
If this is your first time here, the we Are Power podcast is
the podcast for you, your careerand your life.
We release an episode everysingle Monday with listeners in
over 60 countries worldwide,where you'll hear personal life
stories, top-notch industryadvice and key leadership
insight from amazing role models.
(00:21):
As we Are Power is the umbrellabrand to Northern Power Women
Awards, which celebrateshundreds of female role models
and advocates every year.
This is where you can hearstories from all of our awards
alumni and stay up to date witheverything.
Mpw Awards and we Are Power.
I am delighted and thrilled tobe joined by.
(00:50):
I think we talk about inspiringand inspirational so often, but
today I'm being joined by thewonderful Jo Milne, who is
actually YouTube sensation.
Was it 12 million?
Speaker 2 (01:02):
It was 12 million, and it was 10 years ago.
It's just amazing how 10 yearscan just be over in a flash.
Speaker 1 (01:10):
yeah, and you are so accomplished in what you do not
done.
It's not past tense what you doand what you drive.
How would you describe what youdo in?
I was going to say three words,but I think that's absolutely
impossible, so why don't we trya sentence or two?
Speaker 2 (01:29):
Jo, there's a lot to talk about.
I think my story justhighlights that everybody does
have a story and for me that'spart of my story that I'm
particularly very nice and it'sall about the lack of awareness
of the condition that I livewith Usher syndrome.
To just put it very quickly 16years old I was told that I had
(01:53):
Usher syndrome.
Usher syndrome is the leadingcause of genetically inherited
combined deafness and blindness.
When I was in my 20s I was toldthat I didn't have it and then
it was confirmed when I was 29that I did have it.
But the actual diagnosisbecause it's three types of
Usher one, two and three and thedifference is just the age of
(02:14):
onset and the progressivenessand the type of Usher that I was
told I had I didn't have.
I had a type one diagnosis,which means that I've actually
been part and parcel since I wasa child.
So I've lived a life.
I mean, I'm a mum to twochildren and I can just try to
put myself in that position as amum.
(02:34):
What it must have been like formy mum to find out that a
profoundly deaf daughter wasactually going to be losing her
sight.
So it's been like a lifetime of.
It's been like the unknown.
We've been very unsure.
It's been about the lack ofawareness.
Nobody knows what to expect and, most of all, there hasn't been
(02:55):
any positive representation.
There was nobody like me.
You know what.
There was nowhere to turn to,there was nobody I could look up
to.
So that's basically my life, ina nutshell, where I'm trying to
change this.
Now.
I'm trying to change this sothat people do know Russia, by
(03:15):
raising awareness and hopefullyto empower more people to speak
up about their condition.
Speaker 1 (03:22):
And it's easy, isn't it, for the media, for the
health service to labelsomething?
Yeah, it's a degenerative eyeand hearing condition, but we
can't just label things likethat.
Speaker 2 (03:35):
Yeah, I think there's just a lot of, I would say,
uncomfortable about disability.
I think we need to normalisethe conversations around
disability, because disabilityis a huge part in everybody's
life.
I mean, one in four of us havea disability.
You can have a short-termdisability, you know, like if
(03:56):
you look around our lives, therewill be somebody that will love
, somebody that will know thathas a disability.
And I just think sometimes wecan be in danger of trying to
label people too much, becausethere's not too much effort in
just having empathy and kindness, because it's not about what
you can do, it's about what youcan do, and I think that goes
(04:17):
right across the whole board ofdiversity.
We're all different and thatshould be celebrated, shouldn't
it?
Speaker 1 (04:23):
100%.
You're a true role model and Ithink, by choosing to be visible
because you could have notchosen to be visible, but you've
chosen to say you know what.
I've lived with this.
I've done this for my family,because you talked about your
mum, you know.
But by you talking and creatingthe following and Who'd have
(04:44):
thought 10 years ago, 12 millionpeople would have watched your
YouTube clip, which was when yougot your cochlear implants,
wasn't it?
Vitted, yeah.
Speaker 2 (04:54):
That's it, because the story behind the cochlear
implant, a lot of people didn'trealise that it was actually
because I'm losing my sight.
So it was like I was losing onesense and I'm losing my sight.
So it was like sort of I waslosing one sense and I'm trying
to gain another.
And that's why that video wasso emotional and so powerful,
because it was just like thankyou.
I felt very cut off, very cutoff from the world, because I've
(05:19):
always said there's nothingwrong with deafness, there's
nothing wrong with blindness.
That can be celebrated.
It's when the two come together.
That's when it's very, verychallenging and it can be very
disabling.
It can be very.
It makes life, can be quiterestrictive.
So you really have to try toempower that and I think by the
cochlear implant that was one ofthe first moves I made to try
(05:43):
to improve the quality of mylife.
And well, wow, the reaction toit was.
Speaker 1 (05:48):
And you became a global spokesperson and voice of
Usher within a short period oftime.
That must have been quiteoverwhelming, yeah it was very
overwhelming.
Speaker 2 (06:00):
I was just thrust on a global platform and I think
that's when I realised there wasa certain sense of
responsibility.
People were listening and itwas placed upon me to share my
story, because how would peopleknow, how would people learn
about that if you don't speak up?
(06:20):
And I think once I started tospeak up, it was like the wheel
became in motion for theawareness raising and a lot had
happened in the last 10 years.
I would like to think thatthere is more awareness
diversity syndrome happening nowand what would you shout out
there if you could have thatmagic wand?
Speaker 1 (06:38):
what would you ask for now, because you can have
more than one ask, but let's themagic one.
Speaker 2 (06:45):
Well, I founded a charity in 2018 Cure Usher
Syndrome and the words say itall.
Now it's not unrealisticexpectation for a cure for Usher
Syndrome.
It goes back to the lack ofawareness.
The lack of awareness meansthat we'll have lack of funding
and by speaking up, carrying onwhat we're doing that is my way
(07:08):
so that there's a cure for Ushersyndrome and, meanwhile, just
more awareness, more awarenessof the condition.
Now, when we talk about Ushersyndrome, there is at least
11,000 people in the UK livewith Usher syndrome.
Now, that's like the number isvery similar to cystic fibrosis,
for an example.
Now, 11,000 people.
(07:28):
Cystic fibrosis.
Everybody knows what it is,just like the basics of what the
condition is.
It's rare, but it's not thatrare.
You know somebody of thecondition and that is what I
would like, if I'm having twowishes here that it becomes a
global effort that people knowwhat Usher syndrome.
For an example, I have amobility cane with a red stripe
(07:51):
and it is saying for a guide dog.
A guide dog can have a red andwhite checkered harness and one
with a mobility cane.
The red stripe signifies thatwe have a hearing loss too.
So even just to get that intothe public domain of awareness
raising would be fantastic.
Speaker 1 (08:09):
Oh, and it's been recently.
Usher Syndrome's recently beenin soap opera, hasn't it?
Yes, it has, yeah, InEastEnders.
Speaker 2 (08:16):
Yes, it was featured in a storyline on EastEnders and
that was just one of the mostincredible things that could
have happened in TV and media,because when you've got just a
massive audience, we're talkingabout, millions of people are
hearing the words SE syndrome,and not just that.
I think it gives that feelingthat you're not alone, that
(08:39):
there's a community out there.
There's a lot of people outthere individuals, families.
We're all living our lives andjust to get them words out there
, it's like yes we're here we'repart of the world too.
Speaker 1 (08:52):
And for people that are interested and passionate
and driven and motivated by yourdrive and your inspiration.
What can individuals getinvolved in?
Absolutely need funding,absolutely need awareness, but
how can people get involved?
Speaker 2 (09:08):
Well, I would like to think that people could get
involved with maybe likefundraising efforts as well,
because it's all about thefunding People just got behind,
I think like a nationwide effort.
I mean, in June I'm going to bethis is one of these bonkers
things that we're doing forfundraising.
It's like why?
(09:28):
Why do we do it?
But this is what you do, youset yourself a silence.
But in June I'm going to bedoing Scarfell Pike, but this is
during the night, so we set offabout midnight and we get to
the top of the mountain to seethe sunrise and there's like a
wonderful metaphor behind it andit'll be quite moving.
It will be extremely silentthere and for me it would be
(09:52):
great if everybody could getbehind me, even just give a few
pounds, the price of a cup ofcoffee, If somebody could just
help me with that, that would beincredible too and it would
give a lot of hope to familiesand individuals out there.
Well, we will put the details inthe notes that go along with it
.
Speaker 1 (10:09):
Now you said bonkers.
Now I've heard you on a fewpodcasts.
I've heard you are a mediaspokesperson out there for
Curaçao and for disability.
What's the most bonkers thingthat you've done?
Because I've heard you use thatword a few times.
Speaker 2 (10:24):
Oh, bonkers, I think when the story just got thrust
into a global platform, it waslike people were doing songs,
people were talking.
I even had a song written forme and this was an Irish band
called Take your Sweet Time, andif you listen to that song,
(10:47):
that song is those moments thateven some quotes about what the
audiologist was actually sayingto me.
So that was very, very moving.
But it was just like the travelthat was involved as well.
I was in Japan and I wasapproached by the Oden family,
which is a singing Oden family,because they're touched by
(11:09):
deafness as well, and we wereinvited out of Bangladesh and,
with generous sponsors, we wereable to provide 500 pads of
hearing aids to like children inBangladesh and just the
opportunities that they weregiven was absolutely incredible.
And it did actually win aNational Television Award for
(11:30):
the best factual documentary.
And I think what was soemotional about that documentary
is that it captured thosemoments, the same kind of
moments that when my video wentviral, and it's just those first
few seconds of experiencingsound and it's just, it's just
incredible and I've got two bitsI want to pick up on there,
(11:51):
because one thing is I know youwere an ambassador for deaf
children, aren't you?
Speaker 1 (11:55):
because obviously you haven't got enough to do with
running your own charity, beinga spokesperson, being a role
model, but that's that's reallyimportant, because that's all
about leading, about changingperceptions, isn't it of that
hidden disability which wetalked about right at the start?
You can't see every disability.
Speaker 2 (12:11):
That's right.
I think there's a lot to besaid.
Like I said before, I thinkdisability should just be them
confiscating to be the norm,because there's a lot of
invisible disability.
Some people don't want todisclose their disability, and
that's absolutely fine as well.
It's not just all about whatyou can say.
For an example, my mobilitycane.
(12:32):
Some people like to keep thingsprivate.
You know, like people shouldn'thave to disclose their
disability if they don't want to.
That is why it's just aboutpeople.
It's just we're all people andwe all have our differences.
And that's just about people.
It's just we're all people andwe all have our differences and
that should be celebrated.
And I'm also very passionatewith, like the best hearing
healthcare.
It's like I said, there'snothing wrong with being there.
(12:55):
It's when you're losing yoursight.
We need to discuss the optionsthat are available, whether it's
better hearing aids, cochlearimplants, etc.
Etc.
So we're just trying to takecontrol.
I think we all have a certainresponsibility within ourselves
to try to make the best of ourlives.
(13:15):
You know just what can I do tomake this better.
If you're not happy aboutsomething, or if you feel like
you're struggling, talk tosomebody.
In my case, it was like I'mreally struggling with
communicating, and that's why Idecided to have a cochlear
implant.
Speaker 1 (13:31):
And you mentioned before the Take your Sweet Time,
which was a song that waswritten, wasn't it for the video
?
But I know your friends made aplaylist, didn't they?
For you, do you have afavourite song on there?
Was that like picking yourfavourite friend?
Speaker 2 (13:49):
I think for me, because, like the playlist,
there was 40 songs and it waspresented to BBC Radio 6 and
Lauren Le Verne and what it wasit was like it was the build-up
to restriction for the cochlearimplant.
It was like all the six musiclisteners were waiting to see if
it would be successful, becausethe way the conversation was
(14:13):
going it was when Joe's implantgets switched on, there's a
possibility that you may hearmusic.
So I think it just got thenation talking about well, what
song, what song would you choosefor someone?
So that's why I decided to picka song from every year of my
life, so it had like asignificance of the year.
So for the one that stuck outfor me was because it was the
(14:35):
first one that was played to meand it was elbowed one day, like
this and it's just a bit whereyou get the violin playing and
just the head on my arm to standup.
every time I hear that song,yeah, wow.
Speaker 1 (14:49):
And you've got a young family and then, of course
, you've got Super Steve, right?
Yeah, I do.
Now Super Steve is here.
He's feeling all awkward andshy because he's that kind of
guy, but we met Steve a fewweeks ago when you obviously
came along as finalist andfuture list at the 9th Northern
Power Women Awards.
It was glorious to see you andto chat with you, but he's a
(15:14):
good guy, right?
Speaker 2 (15:14):
Yeah, he's a good guy and I think for me I'm a little
bit late to the party.
You know, we've got like youngchildren my parents are starting
to be, all my friends arestarting to be, or my friends
are starting to becomegrandparents and vice versa.
But I think a lot of it was todo with my personal journey.
I think one I'd accepted that Ihad this diagnosis.
(15:38):
I think it's like I started tobuild my confidence.
I began to say how can youexpect someone to love you if
you don't love yourself?
And I think that for me it waslike I built my confidence.
And then bingo, there he was.
It was very much the eyesacross the crowded room when I
met Steve.
(15:59):
And Steve had always encouragedme to be myself, to embrace even
my cane.
He'd always said you knowwhere's your cane?
Get out your cane, use yourcane.
It's part of you.
So I'm very lucky to have apartner that didn't want me to
hide my disability.
He wants me to embrace it and,like I said, hopefully it's just
become the norm and the canedoesn't stand out as much
(16:22):
because it's just like a part ofme.
And yes, we were married withina few years and we'll have two
beautiful children who are fiveand seven years old.
Five and seven.
Speaker 1 (16:34):
And I know sort of taking back into sort of the
challenges around Usher syndrome.
I know one of the things that Iheard you and Steve on a
podcast, because obviouslyyou've got a take in with you
sometimes on the pod, you know,have his voice heard.
But one of the things I heardis when when I think it was
during your second child,because the shifts will change
yeah, there's, there's there's akind of rebriefing of
(16:55):
information because of the lackof awareness of Usher yeah but
having Steve there the wholetime was critical because
otherwise you would have lostsome of that communication just
purely through lack ofunderstanding and awareness of
Usher right.
Speaker 2 (17:09):
Yeah, now, steve's background is that Steve was a
rapid response paramedic, soSteve was very used to the
healthcare setting and I wouldsay just the whole experience of
giving birth to my children.
It was a beautiful moment,don't get me wrong, but it could
have been more beautiful if Ididn't have to self-advocate and
explain about my condition andSteve tried his best too to
(17:34):
explain that and I think it's alife lived for me.
Now I think I've been put in alot of different scenarios and
situations that I can understandabout the lack of awareness and
, I think, the experience ofbecoming a mum twice.
I think that was when it wasthe final straw and it was like
we need to do something about itand my ultimate I would say my
(17:58):
ultimate drive to find this outyeah, and you talk about that
self-advocacy piece, things thatat the start really it would
have been.
Speaker 1 (18:08):
Would it been simpler to to not and just gone?
Yeah, and other people will dothat.
Absolutely.
What made you the the other?
Speaker 2 (18:15):
I think for me um, again, it's just because I've
become a mum.
The state children are watchingyou all the time.
You know, I can see itparticularly in my daughter.
She's only five years old.
She's watching every singlething I do, every move that I
make, and she's my go-to becauseI know she's watching me.
(18:36):
So, for an example, having amum with a zero sensory load,
it's very normal to her.
You know, like in a normal dayday we live, we laugh, we love,
we learn, we do all those things.
So if all of a sudden I startdoing something different, it
wouldn't make sense to her,because that's the very thing
(18:56):
you know, like, just try.
I think looking at the worldthrough a child's eyes is very,
very important.
I think that's the point I'mtrying to make is watching you.
So it's a bit like you liveyour life.
But if the world is watchingyou and that's how I believe to
be living my life now throughthe eyes of my children- what do
(19:17):
you think your superpower is?
Speaker 1 (19:19):
My superpower, yeah, and you've probably got more
than one of those, more than onewish, more than one of those
More than one wish, more thanone superpower, superpower.
Speaker 2 (19:27):
I think that people in my life might say a very
different thing, but I think,for me, the resilience, I think
I believe that, well, I could goback to maybe some of my
grandparents' quotes where theysay you know, where there is
life, there is hope, and Ialways think as long as we've
got well, we're healthy.
(19:48):
Also, that might becontradictory to what I advocate
, for I do have my health.
I'm very lucky to be happy andhealthy, but never give up, keep
going.
Speaker 1 (20:02):
And what is next for you?
Because you're not not stoppingany time soon, are you?
It's the North East genes.
I know that.
Yeah, I think now.
Speaker 2 (20:10):
If you had asked me this last year I would have
thought things were settlingdown, but I think I've realised
things are only getting started.
There's been like a lot ofinterest in my life story.
I think people want to knowmore and I think I have that
passion to carry on because Ican see the difference that it
makes when I'm on it.
(20:30):
Sometimes it's not nice andsometimes it's empowering and
it's positive, but it makes abig difference when people know
what to expect.
And again, it's just raisingawareness and not feeling so
alone.
Speaker 1 (20:44):
And again, it's just raising awareness and not
feeling so alone.
Jo Milne, your spirit, yourcan-do attitude, I love that.
It's all about what you can doas opposed to what you can't do
Life for living, simone, andyour vibe is absolutely glorious
.
Thank you for being a superNorthern Power women and a true
inspiration, and a big high fiveto Team Steve over there and
(21:05):
the kids as well.
Thank you so much for joiningus today.
Thank you, subscribe on YouTube, apple, amazon Music, spotify
or wherever you get yourpodcasts.
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