Do I Have a Disability?

Do I Have a Disability?

Hi everyone, today is one of those videos
where I just want to sit down and have a chat with you. I feel like I do this
about once a year, where there is a particular topic that I’ve been
stewing in and I’ve come to the camera and I want to, as I’ve said in previous
videos, show my work, so I want to talk about a topic that I haven’t
necessarily come to a definite answer on but I think it’s important to show your
progress, to show to show your thinking on a certain topic because I think on
the internet we can be made to feel as though we should always have not just
the hot take on something but a definitive answer and an answer often
that doesn’t change. I think because when we’re posting things on the internet
it’s evidence of our thoughts and that seems like a rigid thing. Someone could
find a video of mine from five years ago today and if they didn’t look at the
date think that that was me today and that I would, in the present, say all
those things that my past self is saying and agree with them entirely, and that’s
not how humans work, we evolve and we change and we learn and those are all
good things. So this is a video, the title of which is “do I have a disability?”
that I have wanted to make for a while but I haven’t really known where to
start, there are so many places I could start
and to be fair I have also been really nervous to make the video as wel,l but
today is the day that I sit down and I talk about this and I would love to know
your thoughts in the comments section down below as well, If you’re new to the
channel, my name is Jen, hi, I am an author and I review books, so I speak about
books on this channel but I also talk about disfigment as well and the
history of fairy tales. So there were several things that made me want to
create this video, one of them links in with what I just said in that on the
internet there are videos of our past selves and our past opinions. When I
started making this channel, making these videos, over five years ago I knew that even though what I wanted to do was talk
about books I was also going to have to make a video
where I talked about having EEC syndrome which is the medical condition that I
have and which affects various different parts of my body but the most obvious
one is my hands. I have missing fingers, I have arthritis, I was born with
syndactyly, I had lots of operations, skin grafts, pinned bones, so when I started
talking about books I also took the time to make one video where I talked about
having EEC and all of the things that that has meant in my life. I made
that so that it would make my life easier, really, so that when people said
to me “what’s wrong with your hands?” because so many people ask that and
still do, instead of having to explain every time I could just link that video,
and in the description of all of my videos right, at the bottom, it’s always
linked and people discover that video all the time, and I agree with the
majority of the things I’m saying in that video about my condition,
the thing that is slightly different is just the way that I approach talking
about it now. In that video there’s a definite vibe of “I have a disfigurement
but I can do everything that you can do! Let me prove it, let me show you all of
the things that I’ve done, let me talk to you about how I learnt how to play piano,
let me you know all of that stuff ” and similarly I also made a video around
that time with Leena, my friend Leena over at Leena Norms, she has a series on her
channel called “stupid questions with Leena” where she
gets people to come on who she then talks to about a particular topic that
they embody, quite literally in my case, and she asks them questions that
maybe other people are thinking but would be too nervous to ask and one of
the questions that she asked me in that video was “do you consider yourself to
have a disability? are you a disabled person?” and in that video I say no and no
is the answer that I have pretty much always given all of my life and there
are several reasons for that. The main reason I think is that because I thought
that that word was for other people to claim and to own
and I felt as if I used that word it wasn’t fair to those people, like it was
a piece of pie and if I took it they wouldn’t have it anymore, and you know
I’m not a wheelchair user, I am not X, Y Z, it’s just it’s slightly strange
really that we have a word like disability as an umbrella term for so
many things, it’s not as though if you tick all of these boxes then that is
what means you have a disability, it’s really subjective, so that’s the
main reason I’ve never said that and we’re talking about ticking boxes quite
literally it’s not a box that I have ticked on forms, if we’re talking about
HR forms, you know, you get those forms where it says “and what’s your ethnicity
and what’s your sexuality and your gender” and I’ve always happily been tick
tick tick tick when it comes to sexuality, yes I’m queer, and then when it
gets to the “do you consider yourself to have a disability?” box
I always pause on it, I always agonize over it and then I used to tick “no.'” If
there was a box that said “do you have a disfigurement?” I would have fully checked
that box but I just didn’t know if I should check the disability box. I have
spent a lot of my life, as demonstrated in that video talking about having EEC,
pushing back against those things, feeling proud of myself, or trying to
feel proud of the way that I look and advocating for visible difference, but pushing myself really hard to achieve things for the sake of
achieving them and therefore passing as an able-bodied person, and I find that I’m cringing within myself just saying these things. There is a
really fine line between pushing yourself because you want to achieve
things and testing yourself and that’s all really good stuff, and pushing
yourself and testing yourself and damaging yourself for the wrong reasons,
and it’s such a slippery slope you, can start with the best of intentions
and you can end up somewhere else, and I have done that so many times, and it’s
it’s a very strange thing to articulate and admit which is why I think I’ve
always said “no, I don’t have a disability” because by saying I don’t have a
disability I never have to admit to all of that bit of my life. Because it’s not
just you that’s going through something, it’s the people that you love,
the people who are closest to you and you want to try and lead as “normal” a
life as possible for them as much as for yourself because people who love you are
upset if you’re not doing so well and I think we can all relate to this, we don’t
have to be just talking about disfigurement/disability we can talk
about mental health, we can talk about you know any number of things, there are
just certain aspects of life that we don’t talk about sometimes. Another
reason that I used to say that I didn’t have a disability is because my body is
a lot different now than it was even five years ago, so whilst I could get
away we’re saying that I don’t have a disability and I’m not disabled five
years ago, that I could pass for an able-bodied person, I find it
increasingly difficult to do that and that is all part and parcel of you know
I suppose the meaning of disability and what it’s like having a disability
because your circumstances and your body changes all the time and therefore maybe
the language and the words that you would use to explain your condition and
yourself change – and I always wanted to do a video… you guys asked me to do a
video talking about my eyesight and also my alopecia because I’ve made videos
talking about those things when they were new health issues for me, and if
you’re new and this is confusing I’m sorry I will link
everything down below, but I made a video talking about my hair starting to fall
out, I made a video when I found out that my eyesight was changing, and I could
potentially lose my sight, and I said I would check in with you and talk
to you about those things further on, I just never know when is a good time to
do that because they’re such gradual things, it’s not as if a huge event
happens and I’m like “all right! now this is a milestone and now I’ve uncovered how I
feel about this particular aspect of it so now I can sit down and I can clearly
lay out the things that have happened and the way that I’m feeling about them”. And
this feeds into something else I want to talk about: it’s boring! It is so boring, you
guys, I think I have said this before in a video, we don’t
talk enough about the lived experiences of having a disability or a
disfigurement like all of the staff outside of “I’m doing
good so you can do good, let’s empower each other!” like that’s all great but I
just mean the lived little experiences of having a certain condition, it is
boring for me to live through, it would be boring for me to sit down and tell
you about. You don’t want to hear about it. But also I’ve noticed if I do not
talk about the lived experience of having a condition the gap between me
and people’s understanding of me, it grows like this slowly over time and I
have noticed that with people that I love dearly, with people who are friends
of mine, family members, because I don’t know how to talk about my condition,
because I don’t want to burden people or bore them or any any of that, it just
means there are certain things that I just don’t talk about and I forget that
other people don’t know about them and that’s kind of strange.
As I said I have no definitive answers it’s just something I have noticed, so
friends often don’t realise how often I spend
in hospital, how often I have to go in and see the people who take care of me. I
have seven different specialists that I see for a variety of different things,
last week I had four hospital appointments, this week I’ve had one.
It’s not always that much time in hospital but there are clusters here and
there and it all adds up, and it’s not as if I am actively hiding those things,
it’s just it’s my existence and we don’t always talk about every part of our
existence with everybody. For instance when I filmed a weekly vlog the
other week, I mentioned on Instagram that I was going to do that and I said “is there
anything that you would like me to include in that video?” and someone said
“could you show us your morning routine?” which was like a very well-meaning
comment, I have nothing against the comment at all, and I just thought “no, I
know I can’t do that”. I immediately, of course, was thinking of
morning routines, of those YouTube videos where people show you their
morning routine, where they film themselves getting up and making
breakfast and doing a bit of yoga and all of that stuff. I can’t film my my
morning routine. So my mornings? My mornings now, I wake up, obviously, I
wake up and I can’t see. tTat’s what happens in the morning when I wake up. I
don’t want to repeat things for people who’ve been around a while and watched
other videos but it also seems a bit mean of me to be like “I’m not going to
explain here, if you’re new there’s a footnote with a video if you want to go
find out more” so let me try and explain very briefly. EEC effects different
parts of the body, it is a clefting syndrome which means that you have more
or less of certain things and as I said I have fewer fingers, I have a cleft
kidney, you can be born with a cleft palate, I didn’t have that but I did have
a jaw that was not entirely normal and had to have operations on my
jaw and my teeth. My eyes, I was born with cleft
tear ducts, so I have to have tear ducts implanted, the
channels in my face that connect my nose, eyes, ears, all
of that, they’re all cleft too which means that I’m susceptible to infection, I have
chronic blepharitis, and what happens with age with people with EEC is that
your corneal cells, so the film of your eye, starts reproducing incorrectly, your
body thinks that it’s sick (it’s not) and it attacks it and it replaces the cornea
with scar tissue, similar to what’s happening with my hair now, my hair is
falling out and because my body’s attacking it thinking I have an illness,
which I both do and don’t, and is replacing my scalp with scar tissue.
There is no cure for this currently with eyes, replacing the cornea doesn’t work
because it’s a genetic blip and it’ll continue to reproduce incorrectly, your
body rejects it, so I am monitored constantly by Moorfields Eye Hospital in
London for changes to my cornea. Because I’m getting older my eyes are just
deteriorating in general in various different ways,
so when I wake up in the morning I can’t see, my eyes are extremely dry, my eyes
now do not produce enough oil to lubricate themselves so I have to use
eye drops throughout the day but in the morning because I’ve been asleep when I
wake up I cannot see until I use those drops, I cannot open my eyes so I have to
have those drops very close to me and if I don’t, if I can’t find them in the
morning that’s really scary because if I try and open my eyes without using those
drops I will damage my eyes, my cornea will get
scratched, my eyes can’t repair that and that essentially is also how you end up
losing your sight as someone with EEC because your eye just essentially cannot
protect itself. So if I was to film my morning routine, that would be the first,
shot me waking up and trying to see again after that it would be me taking
lots of painkillers to compact my arthritis and it
would be me getting into a bath in order to warm up my body and my joints so that
I can move and hopefully work for the rest of the day, and then it would be me
getting dressed and bathing my eyes which I have to do twice a day as well I
have to bathe them in a special solution, and then it would be me getting
dressed and picking what headgear I’m going to wear today to cover up my hair
loss, so it’s just kind of that tiny comment of someone just asking “what is
your morning routine?” gave me the impetus to make this video as well
because as I said these are things that I do not talk about because they’re
vulnerable things and I also want to say it’s entirely fine to not talk about
these things, we all have things that we don’t talk about, that we don’t share and
we are always curating the self that we show to others and we should only share
things that we feel absolutely comfortable in doing, and that’s why I’ve
never done it before because I think I have spent the majority of my life
wanting to pass, wanting to say that I am not a disabled person, hiding certain
things about myself, both because I haven’t known how to talk about them,
because as I said sometimes it’s boring, and also to protect the people around me,
you know it’s a degenerative condition EEC and it’s upsetting for the people
who care about me and I don’t want them to be upset, so I’ll often pretend to be
much better than I actually am. And me doing that.. there was a privilege in that,
because I could do that and as I said I find that harder to do these days, but
also I think I’m just having a newfound self-respect for myself. I used to value
myself based on my output and my achievements instead of just who I am
and if I don’t respect who I am all of the time, encompassing everything in
all parts of my condition, not just the days where I’m feeling great about
myself and I can get stuff done, then how can I expect other people to do
that. and how can I expect people to have a greater
understanding of disfigurement and disability if I only share certain
aspects of that? I’m not cross with my past self for making videos talking
about the disfigurement because I was honest in those videos and I have talked
about certain struggles that I’ve had but I just haven’t talked about a more
practical side I think of living with a body that doesn’t always do what you
would like it to do. And some of those reasons is because the things that make
my body vulnerable are really silly. I have ended up in A&E at Moorfields on
several occasions now because of a rogue eyelash because, as I said, my
eyes now can’t deal with anything. I cannot be around cigarette smoke, I
cannot be near any kind of grit in the air at all. I get terrified by these
things now because they can be extremely dangerous for me and it’s ridiculous
that I can be taken down by an eyelash that I have ended up in A&E on more than
one occasion at Moorfields, a specific eye hospital, because an eyelash got
stuck in my eye and it felt like I had a brick in my eyeball, because that’s the
reality of what my eyes are now like. You know I shared photos from our hiking
trips, as you know Mr. M. and I like to go hiking, we go to the
Lakes and last year we went to Arran, which is an island off the coast of
Scotland and we did lots of walking and I had a great time but I didn’t talk
about the fact that if I go hiking for a week, towards the middle/end of the week
every morning I’m in tears because I’m finding it difficult to walk. That’s not
something that I’ve shared, and I mean I don’t know what I’m saying by sharing
that now. I’m someone who painted her flat even though the ligaments are now
coming off the bones in my hands. I am someone who yesterday tried to make
cookies and because my eyesight was so blurry
I put bulgur wheat in instead of brown sugar. I don’t have, as I said, I don’t
have answers I’m just sharing these things because this is
this is my everyday life: arthritis, hair loss, eyesight, and I sometimes get
surprised by the disconnect between who people think I am and who I actually
am, and that’s to do with society’s perception of illness/disfigurement and
disability and it’s my own fault for the way that I have presented
myself in the past but it’s a complicated thing, right? I think that
with disability and disfigurement, the narrative of our stories is so often taken
from us and people assume so many things about who we are, I feel that we
overcompensate so that we’ll meet somewhere in the middle. I’ve had job
interviews as I mentioned before where I’ve not got the job because people have
assumed that I can’t do things that I actually can do, and every day when I
interact with people there are so many microaggressions with people not wanting
to come near me because of my hands and a few weeks ago there was a woman on
the tube who started shouting that I was contagious and telling everyone to move
away from me because she was noticing I was missing fingers and these kind of
things — not that extreme, the shouting, but the stares the glares the people taking
photographs, the people who work in shops who don’t want to hand money back to me
and put it on the counter, don’t want to touch me — that stuff happens all the time,
every week, multiple times a week, but these are things I don’t share because it’s
just part of my life and when I mentioned to some friends of mine that
that woman had shouted that on the tube they are outraged and it just made me
realize that they didn’t really know what my day-to-day life is actually
like, and we can never know what anyone’s day-to-day life is like but I’m going to
take responsibility for the fact that my body has changed and I’ve not talked about it
with people because it’s a vulnerable thing, it’s a difficult thing to talk
about, but I’ve reached the stage I think whereI have to mention these
things because I can’t not mention them anymore, so if someone said to me today “Jen
do you think you have a disability, are you a disabled person?” I would say yes, I
would tick that box because me ticking that box is not the thing that makes it true — it was already true.
And I’m not saying that you should particularly care about how I identify
in that respect, that’s not why I’m making this video, I thought it will be
helpful to make this video because I think it probably will resonate with
some of you watching this, not just when we’re talking about disability but
maybe when we’re talking about other forms of identity, or how we just in
general present ourselves to the world and the aspects of ourselves that we
choose to highlight or not highlight. I think we all understand that the
internet is a place where everyone is always
performing, as they are in life, I don’t mean that in any kind
of negative way, I don’t mean that it’s secretive or sly or anything like that,
we’re always performing ourselves and we’re always performing a certain role
depending on who we’re talking to, in what circumstance, and the Internet is just
another one of those roles. I think it’s completely healthy to show certain
aspects of yourself and keep some aspects of yourself private for privacy
reasons, I think it becomes a different thing entirely when you are lying to
yourself and I think that that was what I was doing, and what I had been doing
for quite a long time. So those are my thoughts today and there were probably
lots of other things that I wanted to say or things that I wanted to
articulate in a slightly better way but haven’t, such as the case. Maybe I will
watch this video in the future and think “well, past Jen, I disagree with you
entirely!” *laughs* I hope that you are all having a good week, and I will speak to you soon.
Lots of bookish love. Bye! x

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  1. This is something that I have thought about more recently as I have EDS which is on a massive sliding scale but recently I dislocated my knee really badly and the reality hit that this is something I could be dealing with a lot in the future. The part about the reality of day to day life is so true you don't want to talk about it the small things that make life harder than they are for other people.

  2. I am going to say unoriginal stuff but I want to say them nonetheless. Thank you for putting yourself out there, out here. I am sorry you need to share that stuff for us to understand (meaning that we don't easily have access otherwise) but I am grateful that you have a platform where you can share it and also to help us understand better or just see what your daily life is like with your condition. Thank you for making it easier for us and I am deeply sorry that you have live it on a daily basis.
    Thank for your humanity, your sense of humour and your love of others despite the shit you must through on a daily basis.
    Thank you.

  3. Thanks for sharing this Jen 😘 it’s always interesting to see our thoughts evolve over time on various topics, particularly how our thoughts evolve about ourselves!

  4. Jen, like others I thank you so much for this video. I think the vast majority of us had no idea of your "struggle" to get going each day or that a hiking holiday could become painful.
    I had so many thoughts going into this as I am an employment attorney in the US and handled almost stictly Americans with Disabilities Act cases for seven years after the law was enacted to develop the law. In the States you would considered protected by the law for employment considerations and would be in big group as the law covers those who must take medication to control long term illnesses that are not "visible".
    I was wondering since your condition is so rare are the doctors keeping records based on your trearment for others? Have you considered writing about the instances of micro and macro aggression that you and others experience? Or filming a documentary of sorts on the same?
    I know what people suffer in the workplace but your experiences and the things people scream in public need to be exposed…..not that thats your responsibility but you have such a gift in writing and sharing and comminicating…💕

  5. Thanks for this very interesting video – I totally get that you have not been willing to share some of those stories before, cause body sorrows (búk sorgir – as we say in Iceland) are private and can be boring both to talk about and to listen to, but still, it's extremely important for everybody to be aware of these things and what I found most interesting is the fact that you are facing up to your own illusions about yourself cause I think most of us have many illusions that we are not willing to face both about our bodies and our personalities. So your chat here was very thought provoking.

  6. You definitely can't do everything I can do. You can do a LOT more. I'd never be able to do anything like playing piano or writing books. I really envy people with artistic talent like that 🙂

  7. Thank you for your openness and generosity in sharing your story and being vulnerable on the internet. You are an inspiration and I love watching all of your videos. I came for the books, but I stay for all of the Jen-related content! <3

  8. As someone with fibromyalgia/chronic pain, I feel some of this quite a lot. I appreciate this discussion, especially hiding/not-hiding parts of ourselves. I find it very helpful to talk to others who fall into similar camps. If you want to have a private discussion about some of this stuff, I’m sure you have other people to talk to, but let me know.

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