I know exactly what you're saying when you
say like when you're sitting at home writing
you're not like, I'm deaf, I'm deaf
I'm deaf, I say the same for me
like when I'm
sitting around doing my makeup
I'm not like ooh I'm blind, I'm blind
Like, I'm not thinking about my
blindness, I'm just living my life
because this is our normal
(Music)
Hello everybody, we are back
with my series , where I sit down
with another person
from the disability community
and we disscuss all things
life and disability related
and this one is probably the
most requested that I've seen.
So we finally have Jessica
and I'm gonna let you say your
last name
(Laughs) Jessica Kellgren-Fozard
It's ok, I know, it's a difficult surname
we literally like went over this before
we started filming
We've just been like talking on
Google Meet
And I was like, practicing the name
and I was like no, you know what,
I got here, I was too deep,
I was like, I'm jumping
out of the pool.
She'll take over. So thank you-
It's ok. It's complex.
The Kellgren bit is Swedish,
the Fozard is my wife's surname,
it's from Normandy, smush it together,
it's complicated for everyone.
Or Jessica Out Of The Closet,
which I think is a brilliant name
because not only are you one of
the most fabulous fashionistas
that I follow on social media,
but you are also in fact out of
the closet, and so I think it's just
such a fun username.
(Laughs) Yeah,
out of the closet in many ways.
Out of the gay closet, out of the
disability closet, just living life open.
That's the way to live life.
Being your best, most authentic,
confident queen self. And that is
exactly what you do.
I watch your videos and I
legitimately laugh out loud.
Like you're one of, not only the most
fashionable people I follow but one of
the funniest people I follow,
and I think that you, just by simply
being you, break so many disability
stereotypes and misconceptions,
and I think it's so fabulous for just-
so thank you for just exisiting
on the internet.
(Laughs) I mean, I could say
the same thing about you, Molly.
I woke up this morning and I was like,
OK, Molly, you have to try to look, like,
a little bit half fabulous
because you're going to be sitting next to
Jessica in a video and it's going
to be embarrassing.
Oh no, I think you are incredibly stylish,
I must say. I always enjoy
your Instagram as well.
Thank you, I appreciate it.
So, I know a ton of my audience
knows and loves your content already
but for those who don't, would you like to
kind of give the brief introduction of who
Jessica is in a nutshell.
My goodness, okay, the elevator pitch
of me, then, I guess.
So, I'm Jessica, I'm a YouTuber,
content creator. I make content that is
generally fun, informative, educational,
amusing, around things that are to do with
disability, chronic illness, and LGBTQ+
issues. So I have two genetic conditions,
hereditary neuropathy with liability to pressure
palsies, which means that there are gaps
in the myelin sheaths that surround your nerves.
For me that means that I can paralyze
parts of myself, that my nerves are more
easily damaged, which does things like
affect my hearing and I have loss of
vision in one eye because of it, and it
can do things like my hands don't have
any feeling because I paralyzed both of
my arms for a year and a half when I was
a teenager. And they came back to a
certain degree, but they can't now feel
anything, so it's like wearing gloves
all of the time. And I don't get hot and
cold, any of those kinds of things,
or wet. Which is really annoying when
you're trying to hang up the washing,
'cause you're like, is this wet?
Is this dry? Absolutely no idea.
And I end up having to like, press my face
to all of my laundry to see whether it's
dry or not. Very strange thing.
And then you just get a random cheek stain
or random foundation stain on the side
of your white shirt.
I mean, I should add, I only do this when
I'm not wearing makeup. (Laughs)
Pro tip.
And then I also have Ehlers Danlos
Syndrome, which is about my connective
tissue, and means that not only am I
hyper mobile, and very flexible and bendy,
which most people think is like, whoa,
what a great party trick, and it is,
it's a pretty good party trick that I
perhaps overused when I was a child.
I dislocated various things just to prove
to people that I could. Don't do that.
That's a terrible idea. Don't do that.
But it also affects connective tissue in
things like my internal organs,
so I have some issues with my heart, and
I have postural orthostatic tachycardia
syndrome, which comes from that,
which is just a regulating blood pressure
issue, so I faint a lot. And I can't exert
myself too much, basically I go up two
flights of stairs and I'm like, oh gosh,
there's a heart attack coming.
Ok, wonderful, and then I've got to lie
on the floor for half an hour.
And the vintage fashion is just a layer
over the top, just to make everything look
gorgeous while we're here
I think you should
make more fashion content.
I'm putting the pitch in now,
and I think a lot of people
in the comments will agree
that you should have like a whole segment
of your channel devoted to
fashion content because we need that
vintage inspo that you bring.
We need your vintage wisdom.
I was just, like, as we were talking
before we started filming, I was
peppering her with questions
about the vintage fashion scene
because I am fascinated by it
and whenever I've tried to do it,
it has not necessarily panned out
So, I feel like you should make fashion
videos and you know when I started
doing fashion content
it was kind of like a total mistake
I wanted to make one video about, like,
accessibility of online shopping
and that was
supposed to be it.
But people requested me keep doing it
and I was like
"Well, If you want me to feed my addiction
and talk about something I love,
I am happy to do so"
There is people
in the disability activism community
who have been upset by that.
Like, they want me to kind of dedicate
my channel to disability.
And I can understand that, but
to me, I am a human
and disabilities are a very real,
important topic to me
and it affects my life daily,
but so does fashion
and the confidence that fashion gives me!
So does makeup,
so does my guide dog,
so does dating,
so do all these other aspects
and I think it's very important
for us, as a disability community,
to show society the human side
of our day-to-day life
and the very normal, average
human things that we love
and that we partake in.
Of course, of course
I always link this back to
children's books
because I think it's the easiest way
to understand people learning new concepts
So, there are so many children's books
that are about issues.
It's about
"Some people are in wheelchairs"
or "some people have 2 mums"
and kids don't love them.
They don't want to read those books,
because they're very much
focused on this one object that you need
to learn. It's not fun!
Whereas, when they are reading
like a fun, adventure book
where oh, the main character just
happens to have a disability
or just happens to have a different
family setup to the nuclear family.
Then it's more engaging
and they are more willing to learn things
And I know the great things about
having disabled content creators
who are creating content
that isn't just disability focused
is that you are also bringing in people
who wouldn't have necessarily have
clicked on your video,
being like "Ooh, I don't know,
I don't know want to
watch something about
a blind person
because I've never really
met a blind person
and that could be awkward."
But if it's a video where you are
doing something else
and they click in,
they are like
"Well, you know what,
this is actually really interesting!
I'm gonna keep watching her
other videos as well."
And then, it's just a great way
to lead people in, I think
And they start to really be
more involved in the issues,
it's not something that's far away
Now, it's "oh, my favourite
content creator Molly
also happens to have
a disability and
also happens to talk about that.
And now I've learnt things about it"
So I always think that's the best way,
but, actually, Molly,
two birds, one stone,
to do with this fashion thing,
I think the next time you come
to England, I'm gonna have to give you
a vintage makeover.
Oh my gosh,
absolutely!!
Once this whole madness
in this world is done,
and we're all vaccinated,
I'm coming out to England,
so I can finally see my brother
for the first time
in over a year.
AND I can see you
and we are doing the vintage makeover
I'm absolutely holding you to that.
But I could not agree more with
what you've just said.
My favourite thing about what
I do is that I get to
make learning fun for people.
I get to teach
people in a way that entertains them
that truly is the best way to learn.
That's how I always
learned the most growing up
I was never somebody
who could sit in class
and hear you talk to me about something.
I need to be the one
that was getting up and doing it
I was a very kinesthetic learner
I need to be actually doing the thing
and immersed in it
to be able to understand it
and being able to
hopefully be entertaining to people
um, while they- they learn
and open their minds
to new ways of thinking
is so rewarding
so I completely agree with you
And I always say
we talk a lot in the disability community
about the fact that
y'know that we're quite low
on the totem pole of causes
and of things that people care about
and talk about or know about.
You know, you often see those like
"Diversity panels"
and it's like everything is shown
... except disability.
And we're like "Hey now,
"Hi"
"Where are we at the table"
I think so many different
brands and companies
think that they can kind of get away
doing the absolute least
when it comes to disability representation
Whether that be in adverts
or actually making things accessible.
So many of them think
"Oh, a person in a wheelchair
and we're done.
That's it we've represented every
disabled person,
we've covered everyone's needs, excellent.
Of course our brand is friendly to the
disabled community, we have a ramp!"
And you're like, "Uh-huh, I see.
And how are you helping every other
disabled person?"
Mhm, mhm.
Like, people who use wheelchairs
actually make up quite a small part
of the disability population as a whole.
And, people just cannot get this through
their heads and, of course, having
the disability symbol be a wheelchair,
obviously a very visual way to get that
across very neatly, but it does tend
to make people forget everyone else.
Yes and I- I don't know if this has been
happening in England but over the
last number of years I've been seeing
in North America one change is
certain places are adding other stickers
that represent other disabilities.
Which is nice because for example on
public transit, like a bus, I need to
sit down, it's not a question I need to
be able to sit. Because balance is a
combination, as I'm sure you know as
deaf woman, of ears and eyes.
And so my balance, not being able to see
is quite off. And so standing on a moving
vehicle, even if I'm holding a pole, is
just not really a thing for me. So I need
sit. And so when I get on a bus with my
guide dog, people used to not register
that I was somebody who they needed to
get out of the disability seating for.
Um, so they would just continue to sit
there. But now they've added these
stickers where it's like a man with a cane
a person in a wheelchair and there's
somebody with a walker and I'm like
Thank you for showing multiple visuals
of what somebody who might need to sit in
disability seating could present as.
Yeah, I've definitely seen in the last few
years that kind of not all disabilities
are visible stickers on a lot more things
in public places. And it's so good to see
because I remember when I very first-
so I kind of grew up with a disability
but it wasn't, well I'm not going to say
noticed, but it wasn't diagnosed until
I was 17. And then when I was 17 and I
suddenly had this big health crisis and
very much did need to use, you know,
disabled toilets and I need to have
access to things. I had a lot of issues
with this. Because people were constantly
trying to stop me from using things
saying "Oh that's not for you that's for
disabled people." And I'm like I mean
I am, I don't know what I can do to-
to make this more obvious to people, that
I'm really struggling and things would
help me like this. So it's, it is really
lovely to see now. I worry less about
using disabled toilets in public
when they have a "Not all disabilities
are visible" sticker on them. Because the
dirty jokes I've received coming out of a
disabled toilet on two feet is like, ugh.
Well I think part of the problem with
that too is how many able-bodied people
just do use the toilet for people with a
disability?
Um, so many, so many able bodied people
do use different facilities that are
accessible and designed for people who
actually need them due to a disability.
And, so now I think when people see
somebody presenting as able-bodied, they
just kind of assume they're able-bodied
because of how many able-bodied people do
take advantage of having a little extra
wiggle room in the stall for when they're
pooping and they don't want anyone to hear
it and I'm like that's not what, that's
not what that was for. It's not for all
you extra shopping bags, ma'am.
It's for people who require either the bar
for support, who require the extra room
for a support worker, for a service
animal, for a mobility device. Like
there's many reasons that that exists.
But your extra shopping bags or like
extra room for popping, isn't what it was
for.
The unfortunate thing as well is that
so many places will put their baby
changing facilities into the disabled
toilets. And it's not like a special
um, weighted table it means that you can
anyone larger than a baby. It's literally
just there because they've lumped in
parents, disabled people, sure. You can
use the same facilities, it's fine.
You know, you'll never need more than one
person using it at the same time. And I've
had things where I have walked out of a
disabled toilet and a mother rammed her
buggy into my legs and was like "Oh, not
disabled or with a child then." And I was
like uhhhh... And at the time-
Actually very disabled thank you!
And at the time I mean I was a teenager
and I was too upset to say anything or do
anything. I'd only just been diagnosed
and I was like, oh this label of disabled
do I get to use this? Do I have the right?
Can I stand up to someone and actually
say "Actually I am disabled?" And it
really upset me inside and it was so
heart wrenching. Despite at the time I
had two paralyzed arms. Like, both of my
arms were paralyzed and I needed to use
the disabled toilet because it was the
only way that I could go to the loo.
Um, but for ages after that I would not
without someone else around.
You know, you've mentioned, I've mentioned
that you're deaf, and I think there's a
a lot of stereotypes that come with that.
Just like blindness and people are like
"Blindness, you can't see anything," a lot
of people think being deaf you can't hear
anything. Being deaf you can't speak.
There's a lot of things like that and so
And then you've mentioned you know your
diagnosis or being disabled as a child
and all of these things, but we haven't
actually like dove into it. So for those
of my followers who have never heard your
story could you kind of give a synopsis of
like, if you're comfortable, what your
diagnosis is? I know that uh, things like
EDS can be very hard to diagnose again,
an invisible disability so what was your
diagnosis journey to getting all of- all
of these diagnoses?
Well, with the NHPP, uh, the diagnosis
was sort of straight forward in that it
I'd always struggled with my hands and
feet as a child. And just being kind of
what was called "clumsy" because they
didn't realize that it was because I
couldn't feel what I was touching. And
you don't realize things because you
assume as a child that everyone else is
like this. So I can't feel the front of
my calves because when I was a baby I
crawled around on them and I've never been
able to feel my knees. And I just assumed
no one can feel their knees, right? Like
you can't feel the skin on your knees
that's weird, who can do that? Um, but I
thought this was totally normal til I hit
17 and I was in an exam and I lent on my
elbow for about twenty minutes whilst I
writing. And I got a crick in my neck and
woke up the next morning having paralyzed
my arms. Because this crick in my neck had
been so bad, I'm not helped by the stress
of this exam and the fact I'd been on
crutches for like six months before this
point. Um, and I had paralyzed both of my
arms and they stayed that way for a year
and a half, which was very difficult. And
I got rushed to hospital of course and
they were trying to find out what was
wrong with me, it could have been a stroke
it could have been meningitis. And they
ran all sorts of tests, did all sorts of
things and then ran a genetic screening
and were like "Oh, ah, you're actually
missing a gene." I was like, oh right
goodness. So I'm a mutant, which is great.
Still waiting for my X-men powers.
Fellow mutant here so I'm with you.
There we go, see? Have you got your X-men
powers yet? I'm hoping that mine will kick
in soon. / Not quite yet. / A bit late
you know? / Yeah I think they're in the
mail but you know the mail's been slow lately.
It has. We'll just keep blaming it on the
pandemic. It's fine. It's fine. So that
diagnosis was actually pretty
straightforward because it was
very much, "oh we ran your DNA, cool
you've got this" There we go.
But the EDS was a much harder
diagnosis and funny enough,
actually came from YouTube
and my subscribers.
So I was diagnosed with a thing called
mixed connective tissue disorder. Which
is also about being hyper-mobile
and having collagen that is kind of
too flexible and
it also affects your internal organs, but
there were parts of it that
just didn't- i just didn't fit?
I didn't like tick like all of the boxes?
I ticked quite a few of them and
my doctor was like, "Ah, well.
I don't know, maybe it's cause you've got
that other thing as well.
And you know how doctors don't
really talk to each other
if it's not their specialty.
They're like, "Oh, no, sorry.
I'm very specifically an eye doctor
so I don't talk to the brain doctor."
Like, " Oh, thanks."
But this is all one thing.
It's all in- it's all in my head so
if you could coordinate with each other?
They're like, "Oh, no, no, no."
Not my thing/It's also just one body.
Yeah, yeah. One body. One human.
All works. It's a system.
And they're like,
"No, oh no. Just this one thing"
So they always just kind of
chalked it up to that.
That I had something else and
therefore that's why I didn't really
fit this profile and it was a bit weird
and I talked about it on my YouTube channel
I've got this and this
but then in other videos I'd kind of
talk about what I was struggling with
and then say it's a bit hard because
my doctor says: This doesn't fit the profile.
And people in the comments were like:
"That's probably because you have EDS Jessica."
"Have you got checked?"
"I think you've got EDS Jessica."
"Pretty sure you've got EDS Jessica."
"This is EDS."
And I was like, is it?
My goodness.
So I went to my GP and said
well I didn't say the internet says
I have EDS. I was like:
I just would like to be re-referred
to rheumatology please.
So they could maybe check to see
whether I definitely have this thing
that I was diagnosed with?
Or maybe I have another thing.
Ehlers-Danlos Syndrome? Heard of it?
And my doctor: "Oh well that's not curable,
so I'm not gonna refer you"
What?!
I was like... I'm sorry?
Well we just shouldn't know if we have
uncurable things.Obviously.
What what what?!
And he was like "Yeah they're very busy
So, I'm not gonna refer you for them."
Ok! Right!
So I ended up having to go get a
private diagnosis.
Which, I live in England. We have the NHS.
Doing private healthcare is like
a weirdly out there type of thing.
We don't do that much.
So, I went to get a private diagnosis.
Saw a private rheumatologist who was like:
"Yeah, you've obviously got EDS."
I was like, Oh!
Ok, well the internet was correct.
See? Sometimes you can listen to the internet.
Ok, that's how my Youtube subscribers
wonderfully diagnosed me.
What a story. I love that for you.
Now do your two diagnoses
often go hand-in-hand
or are they rarely seen together?
According to every doctor I have ever met,
I am the only case of these two things
interracting. Because, HNPP is quite
a rare neurological condition.
And it comes from my father.
And my hyper mobility comes from my mother.
So, I'm just blessed.
What a combo.
Well, it's made quite a wonderful woman.
So, I'm glad we have you.
I'm not glad for your pain.
I'm not glad for what you had to go
through to get here.
But I am glad our community has you,
because we need more people like you.
With such a powerful voice and
a powerful story.
As you've said, you've come out of the
closet twice.
As a disabled woman as well as being gay.
Can you share some of that journey
of intersectionality. Coming to terms
with two different, being apart of two
different minority communities.
So I think I have a very different story
and a very different journey then most
young LGBTQ+ people.
And I think in a way, that my disability
really does play into that.
So, I don't have a coming out story
because I never came out to my parents.
I was just always kind of like:
This is me. This is who I like.
I really like this gal in the X-Men and
we're going to date and I
will marry her one day.
And my parents were like:
"She's animated but you do you."
I'm like: Yeah!
Sp, I think partly my parents
are Quakers.
So they never put any expectations
on me. That I had to be a certain way.
They never said, you know,
"When you grow up and get a husband."
It was always just:
"When you grow up and if you choose
to get married."
I'm like, yeah ok.
So it always felt very open and
like I could kinda share that part of me.
But, being disabled and having that with me
as I was growing up.
Not knowing that I was disabled but knowing
that there was something about my body
that was wrong and people weren't listening to.
Weren't believing in.
Because, my god, when you're a child
and you try to tell adults things,
it can be very difficult to explain
medical conditions because people dont
tend to believe children about these kinds
of things. When you say
you have a headache, they're like,
"Yeah, but you know. Not really.
Cause you're a kid."
Like, no no.
Genuinely, I'm having a migraine
right now. I realize
I'm a child but I'm having a migraine.
And having that to kinda battle agaisnt
and deal with made my sexuality
almost a...it almost became
something that I, of course,
I would just accept it.
Because I had something that was weighing
quite heavily on me and my
sexuality only brought more joy.
It was only, I mean I'm not saying it
brought me joy as in like,
I had lots of girlfriends.
Which I really didn't at all.
But it brought me joy in that,
I would have these beautiful really
close relationships that I would
have this massive crush on an actress
and I get to like, watch her and things.
and feel happy and I was like yeah!
This being gay thing is great!
I love it!
But then the body.
I was like ugh, my body is useless.
But at least I'm gay.
So I've got that going for me.
Yeah, it became more of a saving grace
throughout my teenage years.
Struggling against a body that didn't work
and being told that it should,
being told that I was incorrect on something.
And then having this thing that I was
really sure of and happy with and
quite passionate about.
So, it's definetly a different coming out
then most LGBTQ+ young people
but I, in a way, hope that it's something
that we get more of going forwards.
That it's more accepted.
That children are able to
just speak their minds.
That people can support them.
That's a really beautiful story. Honestly.
You know a lot of my friends growing up
were LGBTQ+ because I was the only
disabled kid and they were the only gay kid,
or the only trans kid, and so y'know we
just were like, "Hey!
You're also different and not like the other
kids in class. We should be friends."
And so I really like hearing your story
because it is very different than what
a lot of my LGBTQ+ friends went through.
There's actually a really big crossover
between the disabled community
and the LGBTQ+ community.
I think, correct statistic, is that
one third of people who are LGBTQ+
also have a disability.
Which is a really interesting statistic.
But I think a lot of it has to do with
the fact that you have to come out
about one thing, so you come out about
something else. Like you're more
comfortable with the other thing and
you're like, "Look, let me just
put this out here. You can all clearly see
that I am disabled, so while I'm here,
I'm gay too."
Well yeah! It's like you already have this
big thing to accept about yourself.
You already have this big target on your
back or you know a community runt
so you're like, ok well, I've got one
thing here's the other.
So I can see that statistic being true
honestly because, as I said, some of my
friends are LGBTQ+ and I'm disabled
so I kinda do have a lot of friends in
both worlds and I see a lot of that
crossover. I see that now, at this point
in my life, see both communities.
Many people do identify as being
a part of both.
When you met your wife did she know
sign language.
No! (laughs)
She didn't. In fact, I first met my wife,
on our first date, I hadn't told her
anything about my disabilities.
I kind of wanted to see whether she
liked me because I'd been on so many dates
and spent so much time explaining
what's up/ Yup!/ and you never hear from
them again and ugh, it's such a waste of
my time!/ Very much agree!
But then you have to balance it with
do I want to go on a number of dates
or do I want to spend a whole month
talking to someone and then I tell them
and they're like, "Oh, I can't redo that?"
And then you're like, "Ugh! Well I
just wasted my month of talking to you.
What a waste of time!"
So when she first came up
she actually thought that I was wearing a
bluetooth device and if it's working?
Cause she saw my hearing aids and was like
"Oh, she's working hard! Continuing on
with her bluetooth device."
And I think to start with, though I was
a bit rude that I hadn't removed
my headphones. I was like:
"Umm yeah should probably tell you
that I'm deaf."
And so yeah she didn't know anything.
But she was very blasé on our first date
I didn't tell her, you know,
"This is me. I have this disability.
This is how it affects me."
She was like, "Ok. Mmm. Do you still like
to go for walks in the woods?"
"I do."
"Do you still like national trust properties?"
"I do."
And it was just like the basic things that
she needed to know like, "Are you good
around trees?"
"I love trees. It's wonderful."
"Do you love an old property?"
"Love an old property."
"Excellent"
Basics of our marriage, that.
Country girls at heart.
That is actually exactly how a first date
with a disabled person should go.
Word to anybody who ever goes on a date
with a disabled person.
That's how you know it's a good match:
If you're able to be blasé and focus on
the actual parts of them that are human
instead of the disability. Key!
You will win a lot of points with us.
(giggles)
You mentioned something that like
really hit me and maybe we can talk about
it more on the video that we do on your
channel cause this video is already
forever long but it like almost got me
like choked up because when you said it
it resonated with me so hard.
And that is: You look more capable then
you sometimes are.