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