Hello lovely people,
Welcome to a video in which I’m probably going to cry a lot (you’ve been warned)
and talk about my experience of going through university with a disability.
I mean it’s stuck up there with washitape so what are we expecting(!)
It’s the follow up to my ‘disabled in school’ video which… I uploaded in June
2017.
So… just a little late then(!)
I’ve put off making this video because university wasn’t a very happy time for me. In fact,
it was an actively unhappy time. That cost me £35,000.
But it’s fine… it only hurts
when I talk about it.
If you’re new here, hi, I’m Jessica, I make videos twice a week, generally about
my own painful life lessons from being genetically deficient and the things you can learn from
them to hopefully better your own life. Subscribe if you enjoy humorously harrowing admonitions!
In retrospect, I probably did all of the wrong things and made terrible choices and thus…
perhaps this video is just me getting everything wrong over and over again by way of advice
on what you should not do because if there is one thing you need to know it’s:
don't be me.
I was born with two genetic disabilities: one that affected my nerves and one that affected
my connective tissue. So basically: I have great teeth and bones, the rest is highly
suspect.
This gives my body such a beating that I have what I call a ‘chronic illness’: being
in a state of having a cold at all times. You know when you feel lousy and your body
aches all over and you’re exhausted and a bit sick-y? That’s me all the time. But
throughout my childhood no one really believed me so I became a wonderful actress because
I just had to pretend that I wasn’t in pain all of the time.
Oddly it made me very optimistic and chirpy! So that’s good.
that's good
By the time I went to university I was already out of step with… my life… it felt like.
Right at the end of my penultimate year of school I became very ill, damaged my brain,
paralysed my arms because of illness- as you do!- and then everything just got so messed
up…
I’ve talked to a number of publishers (side not yay) who want me to write a memoir about
being suddenly incredibly ill and effectively becoming disabled and coping and- but I was
so ill and it damaged my brain to the extent that I cannot tell you everything that happened
because all I have are snapshots from a frayed timeline that float out of sync and I honestly
cannot always tell what’s real… Did that happen? Or was it just a passing thought I
had that year because my brain has logged them as the same and I can’t tell you which
is which and…
I’m trying to reach into my mind for facts and concretes and dates but…
I have foot drop in my left foot. I tore the ligament and that damaged the nerves so now
my brain doesn’t really recognise my left foot. It’s there. Obviously it’s there.
I can see it. But the nerves make it feel as if it’s not. So I liken it to walking
on jelly- as if my foot is a gelatinous blob attached to the end of my leg and I just have
to trust that it is there. Because it probably is. Maybe. And when I walk I just have to
trust that it will move, that it will land and that it will take my weight.
That’s how my memories work. And sometimes it’s terrifying. A person I met breifly
in a shop one Saturday may know more, own more of my entire weekend than me. Because
they at least remember five minutes and I remember nothing.
I just have to trust.
So hey, I’m going to tell you about my experience of being disabled in university. And overwhelmingly
the only bits of it I can really grasp are negative. But that doesn’t mean it didn’t
have positives. And if you knew me at university and we had wonderful fun together, me not
remembering it doesn’t make the goodness any less real. And I don’t want you to think
that this video means it does.
Memory loss: it hurts.
It really, really hurts.
But what I meant by ‘messed up’ when I was referring to my schooling was both that
my memory is fuzzy but also… just that everything was fuzzy in person.
I had to re- … okay that can just live like that now.
[laughs] I had to ‘redo’ the year of school, even though I didn’t go to any classes,
I just had to wait out the year for the exams to come again. And I’d sometimes go in and
see people… but now all of my friends weren’t really talking to me and there were certain
classes I couldn’t do, like maths, because I had temporarily paralysed arms and needed
to dictate in exams and apparently that’s not possible in maths. I don’t think that
stopped Steven Hawking but fine.
I was going through something that was really hard and I just felt incredibly alone.
I took the exams at the end of the year and by then my own year group had left. But I
was still a year behind… but I was now too old to be allowed to go to school. So I was
moved to a college.
And… I think I was doing an art diploma?
Which seems like an odd choice now.
All I remember is that there were twins. And quite a few people were scary.
It was with other teenagers who hadn’t managed to make it through school. Maybe it was meant
to be a therapeutic thing? I don’t really know what happened to that… but I didn’t
finish it.
Maybe I was also doing some A Levels at the same time?
I think a teacher from my old school came to my house.
But I also have memories of doing two years of the English Literature A Level in one year.
And there was a lesbian in that class and a blonde girl.
[lights fall] Okay…
I mean honestly, all I wanted was some pretty bokeh lights. Is that too much to ask for?
To be honest it is a good thing this light drama is happening because otherwise I’d
have to cry through this video and that would just be uncomfortable I guess.
Also I was on a long term hospital ward and it had an exercise bike with a really nice
chair seat and I’d just sit on that and peddle slowly as I read my course books over
and over and over again.
Also I went to London for two months and filmed a TV show called Britain’s Missing Top Model.
Which was wild… and awful.
Somehow that all adds up to four years?
If you have even the slightest grasp of what the hell happened in my teenage years then
you’re doing better than me.
One of the things that kept me going, and I remember it so clearly, was the dream of
going to university. Before I got ill ( was always ill but ‘iller’, I suppose)- before
then, I’d had very clear life goals.
I was the type of girl who colour coded her wardrobe and made a chart in order to ensure
I never wore the same combination of clothes to school. Did anyone care or notice that
I wore a different, fabulous outfit every day? No. But I wasn’t doing it for them.
I was doing it for myself.
And my life plans were equally meticulous.
I was going to go to Durham university. I’d made my decision very early on and I wasn’t
going to be swayed from it.
Durham is a collegiate university, like Oxford and Cambridge, meaning that it has seperate
little colleges within one university. Like houses in Harry Potter. You can choose to
live within the college building, where they serve food, have a common room, a library,
their own sports teams… it’s really cute.
I loved it because it was small and, I’m sure some would think, claustrophobic but
that’s what i wanted.
I’d gone from a very small Quaker secondary school, with only 30 people in my entire year,
to a state school with 300. And then that college thing. So I wanted the kind of place
where everyone knows your name and your business.
Spoiler: that probably would have been the best option for me. It didn’t happen.
And so here we come to my number one piece of advice, the most essential thing of all:
don’t make decisions based solely on your disability. Sure, it’s important. Yes, if
you’re a regular wheelchair user going to a university spread out over a cobbled city
with terrible transport links and no ramps is probably a bad idea. But… our disabilities
aren’t all that we are.
I got into two universities: Brighton and Durham.
Non-British people, to help you understand the difference: for ‘Durham’ hold in your
mind whatever university comes after Hogwarts but it’s a tiny city on a hill and it’s
really ridiculously pretty.
For ‘Brighton’ imagine an old seaside fishing village but
it’s actually full of hard-partying arts students who put things that might not be
legal into their bodies.
Which did I go to?
Brighton. Obviously(!)
I went to visit Durham university for a weekend and I loved it and they were so sweet with
explaining exactly how they could help and showing me this special bedroom they had adapted
for another disabled student who was about to graduate… if that keeps happening…
I just, I just, I just…
The library was amazing and academically it was everything I could have asked for. I clicked
with every person I met. It fit my ‘a type’ personality perfectly. And my goals.
BUT it was really difficult to get around because I can’t walk very far but there
were too many steps and cobbles for my wheelchair and cars couldn’t go everywhere and… it
was also very cold because it’s in the north of Englad and there was no direct train down
to my parents’ house. I would have been really far away from them and from the support
system I had in place. It seemed like too much for my body.
[lights fall] WOW
So ok, I probably built that up in my mind a little bit but it was just what I really
wanted and I was really ill and it kept me going.
It seemed like too much for my body and people around me said it was too academically challenging,
that I shouldn’t put myself under stress. I should go for the easier course in Brighton.
Brighton is a much newer university. All of the courses are really… ‘hip’. Everyone
who goes to Brighton is quite emphatically… ‘cool’.
I am… the antithesis of ‘cool’. Clearly.
But the city was warmer (which is much better for my connective tissue condition), only
half an hour away from one of my aunts, had a direct train back to my parents and supposedly
a great public transport system. The halls were newer and built to be wheelchair friendly.
They had a really big disability department who had been dealing with every type of disability
and knew what they were doing and…
Sure it just seemed like the smarter decision: go with what my body needs, not with what
I want.
Also my mother told me that since Brighton is ‘the gay capital of the UK’ I would
definitely find a girlfriend there.
It took me five years. But I finally found her! The day before I graduated.
Aside from my pitiful lovelife, university didn’t go well for me to start with because…
for some strange reason we decided that I could definitely handle a full-time university
course. Despite my having spent the previous three years doing not much else but being
ill and two of those years just being on bed rest.
Funnily enough university is very demanding, as is moving away from home for the first
time, as is having a body that needs so much looking after it’s basically like having
an infant to care for!
When I first started looking at universities I was told that only 5% of disabled students
studied away from their home town and… wow, did I understand that figue once I actually
got there.
I was put up in accessible student accommodation. A big block of flats where we each had our
own room with an en suite and then shared a big kitchen. So we all had to cook our own
meals and look after ourselves. I had a block of three hours of care every morning in which
someone from a care agency would come in and, help with my needs, do any tidying I needed,
go and get pills from the pharmacy or shopping or whatever, help me shower. But then they
would leave.
It rapidly became clear that whilst I don't need round the clock care there is something
very different about having people in the house with you at all times, even if they’re
in a separate room, and having just three hours of intense ‘I am here to do what you
tell me to do’ but then nothing for 21 hours. Wow...
My condition is variable, it fluctuates. I would have days where I was so ill I couldn’t
lift my head and the carer would have to just leave me food and drink by the bed and then
go… so I was alone until someone came the next morning. Just lying there.
Unable to get up
I’ve talked about this in my ‘having a carer in my 20s’ video but the type of care
I need is more piecemeal: little and often.
Instead I forgot to eat, forgot to take my pills, forgot which day it was and when I
had to go to class and lived in a constant state of panic that because I couldn’t remember
everything there were important things I was forgetting… and I knew that.
If I had a big problem that required more than three hours care I would have to get
my mother to drive from four hours away to come and look after me which I know she didn’t
like doing,
Which is not to mention how much I was struggling just trying to communicate because if you’re
new here and you don’t know it yet, hi, I’m deaf. Deaf deaf. Like, actually deaf.
Like the kind of deaf that means you struggle to communicate with other humans, particularly
when flustered and stressed and at university for the first time and oh yes the government
messed up and so you won’t be able to have a sign language interpreter for the first
term of university. Good luck you are on your own!
If you know me, you know I’m a chatty outgoing person but I just… hid. I just retreated
inside myself because it was all too much, it was just too scary. I couldn’t cope.
So lesson two: don't move away from your support system.
Or at least make sure that there really is one in place before you make
the jump. Think about what you really need and if that is occasionally for someone to
pick you up off the bathroom floor when you can’t stand or hold your head up, tuck you
into bed and make you soup… it’s probably not a great idea for that person to be four
hours away.
Which moves us on to lesson three: be honest with yourself about what you can manage.
At the end of my first year of university I was quite genuinely on the brink of death.
I don’t mean that in a throw away, ‘wow it went really badly’ way. I mean it in
the quite literal ‘oh god, this is real’ way. I lost three stones in weight that year.
I got a bad infection and couldn’t eat. My room was really filthy and so was I because
I just didn’t have the energy to take a shower.
No one was there to make me.
You could see every one of my ribs
and I was a hermit who didn’t leave my room. I was so scared all the time.
I have no idea how I passed that year… but no one ever told me I failed so…
I fought with my parents to return to university. Not because I particularly wanted to, more
because what the hell else was I going to do with my life?
In no way could I manage a full time university degree along with living by myself along with
looking after my pretty broken body. One of those things had to give.
I switched my course to something in a similar field (film and screen) but with less ‘we’re
going on a field trip to london for a project’ type coursework and more ‘sit and watch
these films’. And I went part time… except I didn’t because that’s not how the very
broken education system works. Basically, I couldn’t get the financial help I was
entitled to as a disabled student, that paid for my sign language interpreter and note
taker in class-
Side note: you need a note taker when you’re deaf because you’re busy using your eyes
to understand the words, not your ears. You can’t then be using your eyes to write and
your ears to take in the information.
The disability department at the university will organise all of this but because they
work with such a broad spectrum of disability that doesn’t mean that they necessarily
know how to deal with your specific needs so you need to be quite bold in creating an
action plan with them. I found that out the hard way. They were really great when it came
to my dyslexia: I got a free laptop! And a printer and extra time in exams. Wonderful.
But when it came to being ill… uh… they were more used to students who were skiving
off than they were people who really, really wanted to go to class but were too ill.
On the days when I couldn’t make it to class I had to phone the disability department (yes,
phone, I couldn’t do it by email or text) and give them a good reason why I couldn’t
go to class. Just picture me: utterly exhausted, in the middle of a splitting migraine, so
unwell I can’t make it two meters to the sink to get myself the water I desperately
need, phoning someone with no clue about whether they have even picked up the phone and then
just randomly talking in the hope that someone is listening and not only that but that they
believe me because if they think I’m just a regular partying student with a hangover
they can charge me for the interpreter and note taker who would have had to go to my
class.
I couldn’t get the money for that if I was only enrolled as a part time student so the
university had to enroll me as a full time student but I chose half of the modules to
go to and do the work and then just had to fail half of them to be retaken the next year
when I was technically ‘repeating the year’ because I’d failed. So I went through university
with four different intake years in the end… which made it pretty hard to make friends.
I took part in extra curriculars though: drama club and cheerleading although I was utterly
unreliable and probably terrible at socialising because I didn’t know then what I know now
about even simple things like asking people not to turn away when they’re talking to
me or not to cover their mouths. I probably just nodded a lot and said things that didn’t
really relate to what they were talking about because I just desperately wanted to be included
and part of something and not feel like that weird kid who gets trotted out for special
occasions and the others have to play with because it’s that’s the nice thing to do.
Not that anyone made me feel like I was the weird kid. I was an isolated hermit crab who
wanted to make friends more than I wanted anything else in the whole wide world. And
sometimes I did. I had fun. I don’t remember it. But I know I had fun.
Sometimes my memories are just snapshots, like a thumbnail I’ve managed to save when
I lost the original video… I once stayed in a club until it closed and walked home
with them as we laughed. I have this photo in my mind of them walking in front but they’ve
turned and they’re smiling. I must have been in bed for days recovering but that’s
a nice memory to hold.
I think I made some people laugh and I organised the most profitable bake sale the cheerleading
squad had ever had. I remember snapshots of talking people into buying cakes, which is
something I’m weirdly good at. I didn’t exactly do a lot of cheerleading but I had
the uniform and that made me happy.
Lesson four: don’t isolate yourself. It’s terrifying being different. It’s terrifying
being visibly different. And it’s terrifying being not visibly different because you have
to explain so many times that really sometimes you would actually like a massive, flashing
neon sign over your head that says ‘disabled! Could you just give me a minute here?!’
Everything moves so quickly when you’re a student and whatever your type of disability,
I think we all just need an extra 60 seconds to deal with whatever the
hell is going on now!
I shut myself away in my room a lot of the time and I felt incredibly unsafe constantly.
I lived in halls for three of my five years at university and every month someone had
Every month? Probably every week.
to have a loud party in the kitchen with random drunk people I didn’t know and I couldn’t
lock my door because then how would someone come and rescue me if I have a problem?
It’s not their fault, I wasn’t someone else's burden. I was my own.
Look, I don’t want to put you off university
This is not what this video is about.
I don't want to say that it’s too difficult to do when
you have a disability or other needs. And please do not ever let anyone tell you that
YOU’RE the problem or that YOU’RE creating extra difficulty. It’s the system that has
problems and needs to become more flexible and I’m sure every year it gets a little
bit better.
The long and short of it is: I followed my dream of going to university. I made bad choices
along the way because I both over and under estimated my own abilities. I should have
gone with what my heart desired, this course that I wanted to do
and made the system bend around it rather than choosing
the option that looked better on paper.
I chose a university for the gayness and the disability help but didn’t think about who
I am as a person and what kind of university I wanted to go to.
If you think university is the right choice for you then don’t let anyone stop you!
...but also, make a good plan beforehand. And check in with your inner voice.
And the local government to see what help is available.
Because only 40% of students eligible for Disabled Students Allowance actually apply
for it! Because 60% of students have never heard of it! DSA is the UK-wide fund that
can provide up to £30,000 for support including assistive computer software, transport, mentors
or British Sign Language interpreters.
But good luck learning about it from school or college because only 5% of people eligible
were informed about it by their educational establishment. Cool. Excellent.
Thanks school.
Unfortunately you’re going to have to do your own homework on this one.
Again.
[deep sigh]
Did you go to university? How was it? Please share your stories with me in the comments
so I don’t feel so alone in not having loved the university experience.
And while you’re down there, take a look at the merch shelf where all items will be
15% off until the 16th February to make way for a Valentine’s Day makeover! (because
I’m going to get my life together and do that) Snap up your favourite items now because
they might not be around for long...
Thank you for watching and I’ll see you in my next video!
[kiss]