This tuesday my wonderful wife and I celebrated our three year anniversary

[transition sound]

[soft acoustic guitar music]

[singing] I lose my breath whenever I see you

[continued singing] you stole my heart

what is it that you do

my life was grey, till you added colour

[transition sound] what, you didn't think there would be a cheesy montage?

trust me, I have more where that came from

we actually have an entire Instagram dedicated to our love

it's called @jessieandclaud, follow

if you enjoy adorable and occasionally quite cheesy lesbians

I say occasionally, but...

we met in 2014, the year that same-sex marriage,

which - by the way - is just called marriage, became legal

but this video is actually about marriage equality in that sense

although, here's another wedding photo

no, today I'm actually going to tell you about how I was made to choose

between marrying the woman I love, or half my income

because, as a disabled person

I was penalised for getting married

[angry] hmmmm

because apparently disabled people don't count as full humans in their own right

we're just meant to be other people's burdens

subscribe if you too enjoy getting angry at the government

because I have all too polite British rage,

and I need to smile-scream my way through it

I should preface this video by saying that I'm both very British

and very privileged, obviously

I was able to marry the love of my life

despite us both being women

we weren't shunned or arrested when we came out

and I've never been in fear of my life from homophobic idiots

because, let's be honest here, homophobia is merely a lack of information and education

we're not coming for you, homophobes

relax

I'm also very privileged, as you'll find out at the end of my story

because I didn't end subsequently starved to death

spoiler: I'm still alive [bell sound]

I met Claudia a week before I graduated from university

in fact we had our second date the night before my graduation ceremony

I already knew that I liked her so much

going to that date with her was more important than resting up for the next day

or curling my hair for the ceremony

it was obvious that there's something special and electric about her

and our connection just made my heart clench everytime I thought of her

and caught the breath in my throat when she was nearby

throughout my final year of university

which I had been doing part-time

so I could manage my disability and poor health better

I've been working for a local TV station that was just set up in my city

it wasn't a lot of work, just kind of the odd filming or presenting job here and there

for new segments that would then go out online

and add just kind of tastes of the programs to come

the station planned to go live about a month after my graduation

and they'd offered me a guaranteed job with them

which was amazing!

I was leaving university and walking straight into a media job that I really wanted

I had always wanted to go into broadcast

whether that be in front or behind of the camera or probably both

I love creating stories in a really kind of visual format

hi, Youtube

whether that's fiction or documentary

I-

I'm working on becoming the next Lucy Worsley

I just can't tell you anything yet

well, that is such a niche reference

please tell me if you're also a Lucy Worsley fan so I don't feel like a loner

anyway, I knew I didn't have all the skills yet

I want to get better at editing and filming and timing and presenting, obviously

and I loved the idea of being out in the workforce

having work friends

having a place that I went to every day

and did - *work*

since getting ill as a teenager I'd kind of just assumed that wasn't ever going to be an option for me

and to be fair at one point I thought that living wasn't going to be an option for me

so the TV station: it was really small and really...underfunded

but I knew that it was a great starting point

they were also really flexible and didn't mind when I said that I could only work part-time

they also...didn't pay me

which was...not excellent

so I went from being a student, with a student maintenance loan

which is a thing that pays for your food and your rent while you're a student

but you then have to pay it back with interest

and a maintenance grant, which is money you don't have to pay back

because the government realised that not all of us start on a level playing field

and those of us who have further to run up the hill need better shoes

aye, being a disabled student is even more expensive than the normal financial drain that is further education

I wasn't paid for my work at the TV station for the first four months I think

and my only source of income was my disability allowance

which I had been receiving since I was seventeen and was - I think at that time - about £250

for the care side and £350 for mobility

so that's about £600 altogether

and my rent was £500 a month

so I had £25 a week

for food, bills, including council tax, and disabled body maintenance stuff

including caffeine and toiletries, which I get through really quickly and you don't need to know why

let's just take a moment to point out that the food I needed to buy

as someone on a medically restricted diet that mainly involves protein - it's really expensive

I started with money left over from my student loan and grants that kind of kept me going for a while

but I had to cut out a lot of things, including my physiotherapy sessions, that cost-

I think around £60 a week

and yes, you don't get physiotherapy from the NHS when you have a long-term health condition

joy

I sound royal, but please don't assume my parents paid for everything

thank you

I know that there are a lot of people who do a lot with far less

and they are amazing humans

but I wasn't on top of things, and I couldn't be

it's not really possible to meal-plan, when you are unable to get off the floor for half the day

and are not entirely sure what day it is anyway

honestly, I'm filming this and I have no idea what day or time it is

I also had the hurdle of being not very able to walk great distances and thus struggling with public transport

so I tended to take taxis to work, and unfortunately, taxis are really expensive

shocker

the taxi thing though - it seems like such a luxury to some people, and I completely understand that

but at the time, I didn't have a full-time carer, I didn't have a partner, I didn't have someone with me 24/7

and you can say "Oh, Jessica, you seem fine and rational now!"

I do, cause I don't film when I'm not doing well!

but I do still have to live

looks can be deceiving, my voice is deceiving, my ability to list the kings of England is deceiving

I have chronic fatigue, a broken body and brain damage, I'm not great at looking after myself

I would get hungry, realise I hadn't eaten in 12 hours

use the bus, to somehow wander to a shop, but be so exhausted by the time I got there

that I could not remember why I was there, or what was going on or why my feet hurt so damn much

so I get upset, which...was not helpful

and I'd have to get myself a diet coke, which does help

and sit down for a bit so that I could pull myself together

and then walk around the shop and kind of collect random but cheap things

and by the time I got to the till I would be drained and my feet would have turned inwards and be purple

and I'd be in terrible pain, and I'd *know* that getting the bus right back was the "right" thing to do

but I just couldn't do that to myself

so I called a taxi, my, what a luxury

but then, Claudia started to come into my life more, and she, along with a friend, helped me to set up housing benefit

where the government helps you to pay for your rent

and I think they covered £350 of the 500

so I only had to pay £150 a month from my rent

I also started to get paid by the TV company, the grand total of £500 a month

which probably worked out to about £3 an hour

yeah, I was rolling in the dough

to supplement my earnings, I was signed up to a program called ESA

Employment Support Allowance, this is an out-of-work benefit for people who are too ill or disabled to be in work

there are two groups you can be classified into: one where you're expected to be looking for a job,

and one where they just assume that you'll never be able to have a job ever

I was classed into the second group, which was a relief, because otherwise I'd have to attend classes

at my local job centre, and show that every day I had actively tried to get a job by emailing companies

handing in my CV or going door to door and asking for work, which-

what even?! you already know the person is ill, why are you expecting them to also be able to be using

all of their energy searching for a job that they won't be able to handle and you know they won't because

you already booked them on the benefit in the first place!

the government is full of painful and gaping loopholes

in order to receive my ESA allowance of £480 a month,

I was encouraged to take on a part-time job, but told I wasn't allowed to work more than - I think -

16 hours a week or to earn more than £500 a month

after these changes and my bills I probably had £150 a week

which made me feel rather flush and very fancy

but to be fair, everything feels amazing after living on £25 a week, it's not hard to feel rich after that

the only problem was: these benefits were all conditional on my remaining single

were I to move in with someone officially, or even have a person in my life for a period of time - I think it's like a year -

then I would be classed as no longer single and lose all of these new benefits

why, you may ask? oh, well

capitalism is inherently ableist

when people who do not rely on benefits, and can we just point out that disability benefits exist

because being disabled is actually really bloody expensive

and that's why part of the British Disability Benefit is not means tested, because you could be a millionaire

but you're still going to encounter costs

that are forced upon you by an unequal society

and it is only right that the balance is adressed!

when people that do not rely on government benefits get married, they often qualify for new and positive things

like tax breaks, lower car insurance premiums, health care savings

the ability to speak for each other in legal situations

genuinely, one of my cousins got married, cause she had a car crash, and then realised that - wow -

her boyfriend of 15-something years wasn't actually allowed to talk to the doctors

however, when disabled people get married, they are faced with losing life-saving resources

and this stretches all the way back to the eugenics movement

oh yes, I'm taking it there

between the 1920s and the 70s in America,

more than 60.000 people with disabilities were forcibly sterilised

in the attempt to gradually rid the gene pool of traits that were considered "undesirable"

the 1927 Supreme Court decision upholding sterilisation Buck v. Bell

has never actually been formally overturned

oh yes! that's still happening!

courts in some states continue to accept requests from guardians of people with disabilities

for their sterilisation

the Supplemental Security Income - SSI - a federal program meant for Americans with disabilities

with limited resources or over the age of 65

is only available to couples with $3.000 or less in assets

and that is a cap set in 1989

30 years ago!

and has not risen with inflation

you could probably buy a house for that back then

okay, I don't actually know that much about the American property market

in regards to real estate and inflation

but I do know for sure that £3.000 is not as much now, as it was then

and - fun fact - if two people receiving SSI were to get married, their benefits would be reduced by 25%

because people are less disabled when they have someone else to be disabled with I suppose?

obviously, as I'm from the UK I don't know that much about the American benefits system, but, in researching it for this video

I was shocked to learn about the Disabled Adult Child Program, which is apparently linked to your parent's work history

and entirely disappears upon marriage!

wait, what, why? because you were your parent's burden before and now you're seemingly someone else's

or just not disabled anymore?

why so stupid, program? why?

but if you think that's bad, the Office of Inspetor General and Social Security Administration

can determine that a cohabiting couple is "holding out the community as though they are married"

i.e. acting like a couple

and then strip them their benefits anyway!

hm! so you don't even have to get married to lose everything

you just have to act as if you genuinely like each other