You're on three pillows Oh my God I'm so tiny
the funny thing is I'm five nine but I
have a double scoliosis so I meant to be three inches taller
We should be one
foot apart so I'm actually stunted I think that I'm a bit stunted because of
my chronic illness I was on steroids from the age of seven and steroids can
stunt your growth So that's your claim?
Hello lovely people and welcome to a collab many people asked for
Yeah! With the lovely Hannah Witton
I've been dying to talk to you Hannah yes me too and I've had this request a
lot as well! It's finally happening
Today we are
actually discussing one of my most asked questions really which is 'Am i disabled
enough? and what counts as being disabled? Which I think about a lot a big topic
but I thought that we could discuss it because we come from kind of different
backgrounds we've had very different medical experiences Yes
If you want to explain a little bit about your whole body situation body situation yeah so I
have ulcerative colitis which is a chronic illness form of inflammatory
bowel disease and I was diagnosed when I was 7 various flare-ups between 7 and 15
and then in remission healthy fine between 15 and 25 and then had a really
severe flare-up and had to have emergency surgery to my colon removed
and now I have a stoma and I need a stoma bag always had this chronic
illness I've now been thrown into this world of disability especially being
online a lot I feel like I've been thrown into it even more with all
of the politics around it as well because. There can be a lot of politics with
disability and what counts and what is good enough and what isn't and I've
experienced that a lot myself because I have their genetic disability
I actually have two genetic disabilities I have one from each parent
Oh really is that? Awn..
Thanks mom and dad! Excellent!
One is a nerve condition that means I have holes
in the myelin sheath which protects your nerves you think of your nerves like
electrical wire mm-hmm so they have that plastic coating on the outside
Mine has holes in
it's very easy for me to paralyze a nerve or to damage a nerve yeah so if I
put pressure on it lean on my elbow for too long I actually did that an exam
paralyzed both of my arms for a year and a half and that's when I found out I
actually had this thing I was 17. Did you have a lot of symptoms before then?
oh so many yeah and everyone just thought that I was a bit like lazy and
useless. Oh my God... I got told that my whole childhood and
then I got to 17 and they're like 'oh yeah you have an autoimmune condition
Oh mine is an autoimmune condition! [both get excited]
Aparently, women are more likely today autoimmune diseases
Like I don't actually remember being ill
it's so weird - Before 7?
No like because I think when I was seven was when I first
started getting symptoms as well so my parents were like really like no we need
a they kept going back to the doctors We need answers!
No this is not normal, our child's poo is not normal! [both laugh]
I don't remember like the pain or being ill or anything I remember like all of the
medical procedures though I don't take medication anymore because I have a
surgery. Which is then kind of like such a difference because for me it was
definitely that point of I knew that there was something wrong I didn't know
what it was and then I got diagnosed and suddenly was like oh okay I'm disabled
now but not, I've been disabled all along
yeah but now I know I am for sure
Did you like own that word? Like from the moment you got
diagnosed? Well I had this moment where I'd been in hospital on and off for
months whereas they were trying to find out what was wrong with me and I had
this lumbar puncture went wrong so I dehydrated my brain and I had to be in
a dark room for two years and I couldn't have any light sound or touch I didn't
really get to go out into the outside world very much I was just living in
hospital and then I went on a weekend I was let out from hospital (Wow) I got to
go with my dad to a fair I needed to go to the toilet I had these two
paralysed arms and I hadn't actually been to the toilet by myself since it happened
I've been surrounded by nurses yeah I had my mom
I'm 18? I don't really want
want to ask my dad... Yeah, awnn!
Basically, managed to go to the toilet by myself.
Very very proud! and I walked out of the door there was this kind of young mom
outside with this buggy that had her baby in
The always put the baby changing table in the
disabled toilet which is ridiculous! I've never thought about that before! So I
came out of the door and this lady was so angry at me she jammed the buggy into
my legs and went 'oh not disabled or with a child then?
[gasp] And just like smashed
straight past me into the disabled toilet and I just stood there and burst
into tears and I felt so guilty with myself because I hadn't said 'No, I'm
disabled!' owning it. I had never said I'm disabled before
this was like the first time that I kind of realised 'oh this is my life now' and I
felt just so guilty that I haven't stood up for myself
I've never had been
accused for that way around I've had situations where I'm stood outside the
accessible toilet waiting to use it and this woman came out of it and she wasn't
visibly disabled but obviously like I don't know if she was and I also don't
look physically disabled she looked at me and goes 'oh thank goodness you're not
in a wheelchair' [both laugh]
So? Still need it! Thanks lady...
Instead I just laughed along with her like [both fake laugh]
Yeah it's weird.
I haven't had like that kind of abuse I've heard stories from a
lot of people with stomas who have experienced that and so often I'm like
sat on the toilet thinking in my head 'What I'm gonna say if someone like
accuses me when I come out in this toilet' if I'm going to use the
accessible toilet like I have a radar key I I like having with me and I like
hold it out 'I'm prefered' My access!
Give me access! This is my disabled card!
I have a little card that says:
This person has a medical condition they need to use the toilet
Oh! In case anyone actually confronts you? yeah yeah
I often have the thing there
isn't really such a thing as a disabled card and mostly the laws in this country
mean that you shouldn't ask someone for proof their disability that is the law
Again I've had fantasies in my head where I go:
You want proof?! and I'm like
pull down my pants and like show them my scar and my stoma like HERE IT IS
That was my moment of being like
Disabled now, right and then funnily enough a few months
after that I was on a BBC show called Britain's Missing Top Model about
disabled girls so some of us that had like this big moment in our lives where
things have changed and some of the others had been like I was just born
without a hand I don't really think of myself as disabled and then some others
were like I'm a disability rights activist!
Where are you on that?
I personally identify myself as a disabled person (yeah) and like that I'm also a
lesbian, like it's just a thing... I really dislike that kind of person first
language Yeah it's person with a disability
I know that some people like really love that and they hate
disabled person. I like since, again like having the surgery and stuff I'm like I
don't understand the politics of this and I know that some people really like
one or the other. I think one is more British and one is more American as well
and also like I definitely go in and out of identifying as disabled because for
me almost like depends on the situation that I'm in. (Oh yeah)
Yeah like is this a disabling
situation? and some people are like yeah you are disabled now like you're
allowed to like identify as disabled and but then I've got that voice in my head
of like 'but I'm not disabled enough!' That's the thing that was the problem in
the show some of us were very much like I am disabled and you would not because
you don't look like me or you don't have a thing, so like I've just been really
really ill. I could stay awake for about three to four hours a day I was taking
really strong painkillers I couldn't eat much but then that meant that obviously
when you look at me you don't necessarily know that there is something wrong
Yeah you don't see all of that stuff Which some of the
girls found to be quite a problem
because they were like 'she shouldn't be allowed to be on this show representing
disabled people because you can't see her disability' But that's not how it
works! like sometimes the most visible disability is least disabling (yeah)
You can't judge it based on that
I just go around with my day-to-day life so what is
your whole idea of this all 'looks disabled'?
Yeah because you use a
wheelchair sometimes as well? Yeah
Being like temporarily disabled is a really
interesting place to be in like a friend of mine was in a bike car accident
recently and she broke her foot and so hasn't been able to walk on it and stuff
and has been in a wheelchair and is basically like she was like house bound
and couldn't leave the house by herself for like two three months and is still
needing a wheelchair but like somewhere down the line and the next few months
she won't anymore I think it's very interesting like people who are maybe in
that kind of situation temporarily do they identify as disabled? Yeah...
see I think disability is a very weird creature in that it's an identity right?
Much like being a lesbian is an identity. Which is me! [both laugh]
But it's a part of your identity that
can change you can be disabled by something, you can have that thing
whatever that thing is fixed and then be like oh...
Yeah and it could be
like a new like medical invention that helps and and like fixes a part of
you or it could be some things that society does
Again, things I'm learning
about but it's like that there might be a situation that is disabling to you
yeah then if you adapt certain things in that situation it might not be anymore
but then still disabled it depends on like how you look at it
To way into another sticky topic
Deafness Like capital D for Deaf?
But one point in that is
that is that a lot of people don't consider themselves to be disabled I'm
not disabled it's the world around me that is disabling (hmmm) and then you bring
in cochlear implants which a lot of the while the hearing worlds who have never
dealt with anyone deaf can see is like 'oh that's fixed now!' like it's fixing
the deafness right? So then it's good.
Well no! it doesn't fix the deafness. That is
ridiculous you are still a person who is deaf that's an identity having something
adaptive doesn't make it go away (yeah) so a lot of things can be disabling
in terms of chronic illnesses it's not just the physical things because
physical things you can maybe look at and immediately see and think 'oh that's
high in the totem pole of disability'. But my point is:
There is no totem pole! [both laugh]
it's all a lie!
Varies by the individual person. Physical and mental well-being
I was gonna add in the mental side of things as well, mental health issues within
disability because it can be disabling but I don't think we allow for that as
much in society. 'I have anxiety I am disabled' people are like what that
doesn't make any sense?
'No but my anxiety literally disablesme'
To me from the
internet it feels like.. All of our education
Feels to me like the policing
of disability and disabled people is done a lot more by able-bodied people
than it is by disabled people. I'm so sick on Twitter of seeing someone post
because I follow a lot of disabled people, and you post things they're like
and I'll use the word 'as a disabled person' or 'as a person with disability'
and then there's all these comments underneath from able-bodied people going
oh no you are not allowed to say that, you are supposed to say person with a
disability, oh you're supposed to say...' And the person's like screw you
and they're
picking at the language rather than their content. Other than having the
chronic illness I've been able bodied my whole life especially between 15
and 25 not having any symptoms other than taking medication every day I was
like I'm an able-bodied person and now having acquired... again I'm like Disability?
I don't even know!
If you had to tick a box on a form that said 'do you have a
disability?' I would tick 'yes' I think because I would just want whoever that
form was for to know the full picture I think
As you should as is your right!
When I was pre surgery in hospital and I was talking to the stoma nurse who was
like going through everything with me she said to me 'you're allowed to use
disabled toilets but you're not legally disabled' And yeah and that just like
stuck in my head and I've mentioned that to a few people and they were like
'there's no such thing as legally disabled'
Yes can we just yes please the
whole legally disabled thing it's like oh if the government has recognized that
you have a disability you are therefore in receipt of Disability Living
Allowance or personal independence payments then you're disabled
What the hell?! In no way is this true!
In order to apply for any of the disability
benefits you're only allowed to apply six months after it first started I know
make sure it's not something you recover from God fit and then once you have
applied it takes like six months essentially for the whole process so it
must be at least a year and in that time you pretty much have to pay for
everything as well so I went from being no one said I had anything wrong with me
and then suddenly I had paralyzed arms and it was like oh you need some help
there is not I think a hard and fast rule as to what counts as being disabled
especially when it comes to the government deciding yeah ridiculous also
once they decide you are disabled which they've decided I am disabled they don't
send you a card I'm not like carry this with you everywhere I think that's what
I used to think not that there was a car the government decided who was disabled
and he wasn't now it was what I used to believe I don't have parking card I
don't have disability benefits or anything like that
oh so the government don't know I'm just also I'm not disabled yeah it's just
like a minefield I think because I've acquired having a stoma and surgery and
stuff it's having to unpack all of those needless thoughts that I had before
have you found as someone who works in the Internet you have got comments about
your not disabled a little bit the main ones have kind of been not you're not
disabled at all but like you're not disabled enough I already had a platform
when that happened yeah and so that's an interesting dynamic of like oh I've got
all these people who already watched my content and I'm known for like talking
about stacks I'd like to talk about taboo topics in general and then I like
disappear for a month and so I knew that I wanted to like make videos about it if
like this is what happened to me I wasn't expecting like the response that
it was but there was obviously a minority of comments oh and like this
things happen to her and now she's becoming a disability advocate like how
dare she she doesn't know anything she's not disabled enough those videos for me
were like so healing for ya and they were my way of communicating with other
members the ostomy community online and like I watched so many videos of young
women with stomas when I was like lying in hospital just like what is this new
life that I have goodness what will happen now and so like those videos to
me really useful I've always said like you are literally watching me learn but
I actually started my youtube channel because I got hated on the internet
about now I'm gonna wow someone let me come into my Instagram that was like
you're a disgrace to the disabled community how dare you call yourself
disabled you look like there's nothing wrong with you as someone who has a
physical and learning disability I think you'll find I do I think what we've
learned is varies from person to person don't judge people yeah from the
exterior you have no idea what's going on with them no as you don't feel like
you have to be validated by outside if you feel like the thing that you have is
disabling even if other people are telling you it's not and you're like but
I know it is keep on your path I wanted to mention one thing that ties into the
video were gonna film oh yes on my channel I was trying to graph
with how I personally define disabled and yeah and if that like works with
like my condition what I came up with was if the apocalypse were to happen
would I just be able to go legging it I'm gonna try and survive now and I
thought no I wouldn't because of my condition more sanitary I've been
running for a week now there's shit everywhere anyway so on my channel we
were going to be talking about disability versus the apocalypse and
whether or not we would survive different kinds of opposition you
survived the apocalypse I quickly please go to Hannah's channel the more start
because yeah thank you for watching you lovely people see you next time