Being Deaf & Being Blind - Chatting Disability Stuff w/ Jessica Kellgren-Fozard!

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.

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 to 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 girl 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!

Um, I think partly my parents

are Quakers.

So they never put any expectation

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, that other 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 don't

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 me joy.

It was only, I mean I'm not saying it

brought me joy in fact like,

I had lots of girlfriends.

Because 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'm like ugh, my body is useless.

But at least I'm gay.

So I've got that going for me.

Yeah, it became almost 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 really happy with and

quite passionate about.

So, it's definetly a different coming out

to 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 mind.

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 you 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.

And- 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.

Now I can see that statistic being true

honestly because, as I said, so many 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 I've- now, at this point

in my life for both communities.

Met many people who 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, when 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

even liked me because I'd been on so many dates

where you spent so much time explaining

what's up. / Yup! / and then 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 was 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, thought 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 a tree. It's wonderful."

"You good around old properties?"

"Love an old property."

"Excellent"

Basics of our marriage, that.

We're 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.