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