Hi everyone, I have tried to film the
introduction of this video so many times so whatever I say this time it's going to
be the one that we use, okay. Hello, my name is Jen. I am an author and book
reviewer and I also talk about the history of fairy tales and disfigurement.
I've had this channel now for I think about five and a half years and when I
first started making videos I was very nervous to put myself out there on the
Internet in visual form as someone who has a disfigurement. I have a condition
called EEC syndrome which is Ectrodactyly Ectodermal Dysplasia Clefting
Syndrome. It is a form of Ectodermal Dysplasia,
it is a clefting syndrome which means I have more or less of certain things.
I'm missing fingers, I was born with syndactyly - which means that they were
all joined together and I've had problems with my teeth, my jaw, my eyes, my
kidneys, my hair, my skin, it's a very complicated syndrome and I have spoken
about it in various other videos. I will link a playlist of all the videos that
I've made on disfigurement in the description box down below as well as a
link to what EEC Syndrome is if you would like to learn more about it. When I
first started making videos my friend Leena asked if I would go on her channel,
and I'll link her channel down below, she's great, to speak about what it's
like to have a disfigurement, she was running a series called Stupid Questions
with Leena where she would get somebody on who had a condition or was from a
community that she wasn't part of and she would ask them questions, questions
that perhaps people wanted to ask but were unsure of how they could ask,
and it was just a really honest discussion and I haven't watched that
back in a while but I know that some of the answers that I gave in that video
are not the answers that I would give now, not because I was being dishonest in
that video but just because these are really complicated subjects, so I thought
I would sit down and make another video where I went on Instagram and said "ask
me your questions" and I'm going to answer them again. I also wanted to make this
video this week because it is Face EqualityWeek which is a week which is
run by Changing Faces who are a charity that
I have worked with before, they are brilliant, they seek to raise awareness
of people who have visible differences, they have lots of materials on their
websites for employers and for schools and they're generally just fab people
and you should go and check them out. I have also made videos with them in the
past as well which are part of my disfigurement playlist which as I said
will be linked in the description box down below. Ok, so let me answer your
questions. Some of them are specifically about my condition and my life and some
of them are much broader than that so obviously when I'm answering those
questions I can only really speak for myself. The first question I should
probably start with was the one which said "what was it that you said in Leena's
video which now makes you feel as though that's out of date?" I made a video a
couple of months ago actually called 'Do I have a disability?' because in Lena's
video she had asked me 'do you consider yourself to have a disability?' and I had
replied no which is not the case I do have a disability.
There are many complicated reasons why I said no the first time around, one of
those being that my body has changed a lot since then, my condition has changed,
it is a condition that deteriorates and there are lots of different things that
have happened since that which would now make me say that I do have a disability,
but even without those I think probably in a hindsight I would have said yes at
that time, and it's a very complex issue, anyway, if you would like to find out
more I will link that video down below. But on the whole just in general if
you watch Leena's video and indeed if you watch any of my videos from... I don't
know how long ago, but when I first started making videos, I am ...I'm going say... a
stereotype of a person with a disability who wants to show you how happy they are
and how much they can achieve, and how ok fine everything is, and I
think that is also because when you first start making videos it's an
uncomfortable thing for anybody to do and you do speak louder,
you do kind of overcompensate in lots of different ways, but I do remember very
vividly being told when I was younger that I was going to have to make more of
an effort than other people that I was going to have to do better than other
people in all aspects of you know learning and trying, because otherwise
people wouldn't like me, and that was drummed into me from quite a young age,
and so I think you see that a lot with people who have disfigurements and
disabilities or indeed people from any minority group where they feel like they
have to perform better or do more in order to be seen as equal to other
people, and there's just something watching that video back that makes me
feel awkward in that way, and as I said I haven't watched it back for a long time
but the last time I watched it I remember thinking "calm down, calm down"
– there is a way to be positive about life and also honest at the same time,
and I'm not sure that I perfectly married those two things in that video
because I wanted to be seen as as doing good. You can be doing good and still
having problems, so just to put that out there. One of the questions was
"how many operations have you had?" the honest answer I don't know. I tried to
work it out. I was trying to do a timeline because of a piece of work
I'm doing I needed to kind of be able to place everything, and there are some
things I can remember but obviously some things I can't. My first operation was
when I was three months old, so I definitely can't remember that but my
first memory of anything is having an anaesthetic mask put over my face
when I was 18 months old, just before an operation and being very hysterical
about it which is not very nice memory to have. So I asked my mum but she
can't remember either, so I might have to request my hospital records at some
point but there were so many different people in so many different hospitals
because there are so many different things that are "wrong" with me, so I
don't know if that would be possible. Anyway I wrote down what my mum said so that I had it to hand,
she said "you were three months old for the first operation on your hands, then
I'm not sure. You had one in the April and June when you were two- just after
we've moved house, then one on your eyes that year as well, we had to go down to
London for that. Several more when you were three, they said they'd have to stop
at one point because you'd had too much general anaesthetic but then they
decided it was okay and they went ahead with more. You had a pin put on your
right hand just after that. I can't remember how many operations there were
in total" and then as well as other operations I was admitted to hospital for various
other things, so not operations but my eyes were so bad when I was younger, I had
to be taken into hospital so that they could treat me for that. Anyway I was in
hospital a lot and when I wasn't having operations there was physio, there were
scans, there was just... it was just ...it was just quite a lot and I think that's one
of the odd things about having a disfigurement/disability which I don't think I have
spoken about one here before is that when people meet you, they can just see
the disfigurement, they see my hands mostly and they may notice that I'm
wearing hats because I'm losing my hair now, but they don't see or understand
(obviously, because they wouldn't) all of the things that have come before that in
order to to make me be able to use these hands that look different to other
peoples. And I know that's a really obvious thing to say because whenever
you meet someone you don't know the background of their life at all and
that's something that you come to know later, but I think that that's quite an
unspoken thing when it comes to disability and disfigurement — a
lot of the questions that people want to ask you are about the mechanics of how your
body works as opposed to what your body and your "self" has
been through in order to get to the point that you are at, and some of the
questions actually that came through surprised me because they're just not
things that I never thought about before which is fine by the way because I had said
ask whatever you want. Some of the questions were "do you regret having the
operations that you had?" and "when did you start taking control of your own medical
journey?" and I didn't have any surgery that
wasn't necessary... apart from one which I'll speak about in a second. All of
the surgery that I had was necessary in order for me to be able to function. I
was literally born with lumps of skin and bone and doctors made hands for me,
they made hands not just using pins and metal but using other parts of my body,
so I've got skin grafts all at the top of my legs. So no I don't regret any of
that surgery and I'm so grateful to the doctors that I had and still have who
continue to look after this strange old body of mine. The only operation that I
would say "no thank you" if I could go back in time was one of the
operations I had on my jaw when I was a teenager because it just didn't work. I
have a gap in my teeth here because, as I said, EEC is a clefting syndrome. you have
more or less of certain things, so I have some caps on my teeth, if I wanted to
fill that gap I would have to get an implant, but that tooth is up here, it's
up here in my face, so my orthodontist as an experiment decided that he would do
an operation where he basically attached that tooth embedded in my skull to a
piece of wire and then threaded that down as part of a brace that then
tightened to try and coax it to move all the way down my face and into my mouth.
Surprisingly it didn't work but I think as a teenager and even as an
adult you expect doctors to know what's best for you and you want to agree with
them and just do what they say, so that is the one operation I've had
that I would go back and undo because it was just a lot of needless crap to be
honest, but everything else, everything else was brilliant.
And as for when I started taking control of my own medical stuff, I mean I guess
when I left home I suppose, when I was 18. Someone said "did you do
physiotherapy after surgery or did you learn the best way to move as yourself
as a kid?" A bit of both I suppose. I had a physiotherapy after
operations and I had splints that I had to wear at night for a long time, for a
long time, but obviously as someone with a disability
you figure everything out yourself as well because one of the questions was
"what are some things that you can't do?" and that's a slightly difficult question.
I would say I can do most things, I just probably do them slightly differently to
other people, so I can use chopsticks I just don't hold them the same way as
other people, and that was hilarious when we were in Japan because Japanese
people are really polite and they want to help tourists and foreigners do
things correctly, so most times in restaurants I would have Japanese people
coming up to me and trying to get me to hold chopsticks in a different way and
then when I showed them my hands and said "I can only hold it in this way"
obviously they were mortified because it's a very important thing in Japanese
society, well every society but very much an important thing in Japanese society,
to be polite, so they felt they'd be really rude and then it just started
this whole thing. Anyway, so I can do lots of things, there are things that I
can't do that I used to be able to do. I used to be able to play the piano, now it
just hurts so much, another question was "are you in pain every day?" the answer
is yes, yes, my bones are just different shapes to other people's, I have
arthritis, that is painful, but I think with like with most disabilities what I
can and can't do, or my pain levels, they just change day to day, and they're
dependent on so many different things, so there isn't really a specific
answer to that, there'll be some days where I can't do certain things because
of the pain that I'm in, and there are some days where I can do more things. "How
did you learn how to write, did you use special pens?" I did not use special pens
I just used ordinary pens. Someone also asked me if I could type, yes, I can type,
I can actually type very fast, though I can't do that for as long a time as I
used to be able to do; that used to be my party trick. "Do you ever feel tired of
being a sort of ambassador for people with this disfigurements and disabilities?"
Honestly, yes. I mean this is a situation that I put myself in, I make videos
about this, I don't get tired of making videos because I make these as and when
I want to, I'm under no pressure to do that at all. I think it can be exhausting.
I think it can creep up on you in an unexpected way.
Because I am a writer and as writers we generally talk about things that are
quite personal to us, whenever you're talking about your own writing it can
feel like part of yourself is flowing out of you a little bit, and that can be
exhilarating or it can be exhausting and that's dependent on so many other
factors. So say if I'm on book tour and it's towards the end of book tour and
say for my poetry collection The Girl Aquarium, which is about disfigurement and
the history of the freak show, getting towards the end of that tour felt
like everything had got a little bit raw, and that's not a bad thing, it's just...
it's just feeling a bit vulnerable and being vulnerable is
completely okay, and as a writer that's a situation you put yourself in a lot. I
think one time when I felt really overwhelmed with being that positive
person that I was speaking about before was after a run of events in schools
that I was doing, and I was talking about my children's books
Franklin's Flying Bookshop, which is about a dragon but it's also about acceptance
and not judging people, and I want to — it;s my choice when I go into schools to
link that with talking about disfigurement and not judging people based on
the way they look, because I'm really passionate about that and if I'm not
going to do it (I think this is the thing a lot of people with disabilities and
disfigments feel) if I'm not going to do it I can't expect other people to do it. So
I'll talk about it, but there was one moment in an assembly where it was
getting towards the end of that week where I had been talking to schools and
kids are normally so great, kids are so great, but in this particular assembly
when I was talking about disfigurement there was just one boy who just kept on
shouting "urgh!" and "disgusting!" and it's so odd that there are particular moments
that you can be absolutely fine, I'm use that word again, "fine", but you can be fine and
then just something happens and something just taps into something that's been prodded a little
too many times and you can just be completely removed
from yourself and you're suddenly a little girl again and feeling so
incredibly vulnerable. So yes in that moment I was just thinking "why am I here
and why am I doing this?" but then I had to remember that he was one kid in a
whole assembly room of a thousand children and he was the only one that I
could see who was shouting that and also why was he shouting that and didn't that make it
all the more important that I should stand there and prove that I'm not "urgh" and I'm not
"discussing", but that constant proving of self and of showing or trying to prove
your own worth, even though you'll know you're doing it for a good reason,
yes, it's exhausting. Someone said "you've mentioned that
you're a Chernobyl baby, does that anger you and what research have you conducted
on that?" So I mentioned I think it was when I was talking about the TV show
Chernobyl that I might be a what they call a "Chernobyl baby" but there is no
way to prove that, there's no test that you can do, it's just something that my
geneticist thinks is likely. Chernobyl, the nuclear disaster, happened in early
April 1986, I was born exactly nine months after that, and a lot of polluted
rain from Chernobyl was carried across Europe, rained down specifically in the
north of England, if we're talking about England, and then in the northeast of
England there was a 20% increase in babies born with birth defects the
following year. So, yes, my geneticist thinks that is a distinct possibility of
why I was born with EEC because nobody else in my family has it, and the genetic
mutations that were caused by or there were more of after Chernobyl were things like
cleft palates, which is part of EEC syndrome, and other things where limbs
developed in a way that would not be considered to be a hundred percent
normal. So yeah there is a likely chance that that is why I was born with it but
we will never know, it is interesting to think about though and you said "does
that make you angry?" I mean it does make me angry because Chernobyl was something
that really should have been avoided. I'm not just angry about about it for myself,
a lot of people died, it's a horrendous thing that happened. I think
it feels like something that's more anger-inducing because it was created by
man, as opposed to a weird thing that just happened in the cells of my
mother's womb and wasn't because of anything specific.
So that angers me but it's a weird kind of anger because of what do you do with
it? Where does it go? I don't know. Oh THE question "do you ever
wish you didn't have a disability?" I can't remember if Leena asked me this
question. I don't know but I feel like if she had asked me that question I would
have said no but to the question "do you ever wish you didn't have a disability?"
now I would say yeah. Yeah I sometimes do. I think the issue is when
you ask that question is you try and think about yourself without the
disability, and I just have no idea of course who I would be without it, and that's a
scary thing because we like to be certain of ourselves, and, you know, I like
myself so if my disability is part of me then sure okay, but if I could remove
that then, yeah, I would be kind to myself and I would take it away, and I don't
think that means I don't like myself, I don't think it means I'm doing a
disservice to disability activism or anything like that. I think I would have
thought that a few years ago, which feeds into the idea of you having to think that
everything about disability is a positive thing and own it, and I have
come to the conclusion that actually you don't have to do that, so yes I do wish
that I didn't have a disability sometimes but again it's a weird thing to think of
because it's such a strange hypothetical question. Someone also said "did your
disability form your personality in any way?" I mean 100% how could it not? And
there are good and bad things about that. Guys, there are so many questions ,so many,
and I feel like I've already spoken for a long time but could still speak for a
long time, so let me answer one more question and then if you
didn't see the call out on Instagram for questions about disfigurement/disability
or more specifically my condition and you would like to ask a question
you can leave it in the comment section of this video and I will do a second
part to this where I can get to some more of these questions and answer your
questions as well. So let's do one final question which came from a teacher and
they said "if I had someone in class who had your condition, what should I do to
make things best for them?" Let's widen this a little bit let's say "what would
you do if you had a student who had any kind of disfigurement or disability?"
because even if you had a child who had EEC syndrome, their physical needs and
emotional needs might be very different to mine. Anyway whatever you do I think
needs to be led by the person and depending on the pupil's age also by
their parents. If they have been in the school a while and they're just new to
your class and they already know all their classmates, I don't think you
really need to do anything apart from introducing yourself to them, but if it's
the beginning of primary school I think that would be particularly
important to have that discussion and just see if there's anything that they
would like you to help lead with, is there something that you could do in
class, that might be talking about how people are different and have
that inclusivity chat etc, which i think is very important no matter whether you
have someone in your class who has a disfigurement or a disability. Changing
Faces also have resources on this on their website, so check them out. I would
say using books and films as a means to talk about real life stuff, so that a
child doesn't feel singled out is also a good way to go. You can also hire people
to come in and talk about this subject, such as me. I know I said that it can be
emotionally exhausting thing for me to do as part of my job but I do still love
it I do, it can be emotionally exhausting but I choose to do it for a reason. Ok,
those are all the questions that I have time to answer today. As I said if you
have a question that you would like to ask about disfigurement or disability
or EEC syndrome then you can leave them in a comment section down below and I
will do a second part to this video where I answer those and the rest of the
questions that you sent to me on Instagram, as well.
I hope you're all having a good week and I will speak to you very soon
lots of love, bye.
