Hello lovely people!
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
[gasp] quick, stage a fake fight in public so no one thinks you're acting like you're actually married
oh no, wait, married couples can do that too, uuuh
nevermind
look, financial indipendence is important. I don't want to ask my wife for pocket money for the rest of my life
I'm not a 12 year old
I want to be an equal part of the relationship, and I want to be able to make my own money, feed myself
and not feel like I'm just a burden on everyone around
living with a disability is incredibly expensive
which is why many disabled people rely on wellfare programs
however, to qualify for these wellfare programs, people must remain living in poverty
if you make just a litlle money over that cap, then you fall in this grey area
of making too much to be to be helped for free, but not actually enough to pay for the help yourself
the disabled community has an unemployment rate of 18%
it is utterly and patently ridiculous to include a partner's income into ourown
and why is it a terrible idea to boil a person down to their financial contribution to society
and assume that the non-disabled people in their life are capable,
both emotionally and practically
of caring for another adult?
well, currently half of disabled people are abused by a partner or family member
so clearly it's not a great idea
when you make someone, who likely already has problems leaving the house independently
financially dependent on another person, you are cutting off their only chance of escape should things go wrong
and you're also bringing the incredible awkward element into the relationship that is dependency
when a non-disabled person marries someone with a disability, they have to consider not only
if they love us or not, but also whether they're just up to the financial and emotional challenge of having to provide for someone else
we all have baggage, but some bags are elephant-sized trunks
so
back to my story though
in Rome, on my 26th birthday
4 months after meeting her, Claudia proposed to me
as we watched the sun set over the Colloseum
did my financial situation make me think twice about saying yes to her?
[chuckles] no, did it hell
[laughs] of course not, I cried, and I was too overwhelmed to even say yes
so I just nodded alot and we kissed and I thought I was gonna die from happiness
[sniffles]
cause like I said
I have the overwhelming privilege of my soulmate being someone not only makes enough money to
support two adults, but also is a wonderful human being
who I knew would never use that against me. I knew I was safe with her.
by the time the wedding came around
my job at the TV station had ended due to "creative differences"
more commonly known as: YOU OVERWORK ME AND DON'T PAY ME
but it was actually- it wasn't fully my choice so...
and then came the most wonderful day of my life
September 3rd 2016
beforehand we used to be very dismissive of people who said that their wedding day was *the best day of their life*
and I just like to say that the day I met Claudia was actually the best day of my life
but our wedding day was also pretty fabulous, because it was the start of our marriage and
honestly being married to Claudia is
the best thing that I have ever experienced
since we're in our marriage I was cut off from my ESA
- that's the benefit for being too disabled to have a job -
plus any help with housing had already gone and I was back to just my disability allowance of £600 a month
but minus the mobility component now so it was £250 a month to live on
[sighs]
but this time, I had Claudia taking care of paying bills and buying food and also driving me places
yay!
thank god for that
I also lost acces to free prescriptions, because Claudia made above the minimum wage and [deep breath]
that...has absolutely nothing to do with how much medication I take daily to survive, but..
sure
but what if she hadn't been able to make enough money by herself to cover the two of us?
well then
not only would we have not been able to get married we wouldn't have been able to even live together
we would have had to make the choice between being able to eat and being with the person we love
and sidenote: we're kinda addicted to each other
it's a choice that people are forced to make every day
and not just disabled people, families who live below the poverty line are often forced to live separately
or else be unable to feed their children
and how is that in the best interest of anyone?
I spoke earlier about dependency, and it's not just a big domestic abuse angle
that you have to look at, but also little things too
I have many times have to face the uncomfortable situation of being out for dinner with Claudias friends
or family, and everyones pulls out their cards to pay
and she has to cover me, and everyone's kind of aware
that I can't actually pay for myself
or, having to ask for money to buy socks, even
I'm a freaking adult!
stupid capitalism
it cuts you up inside!
but then, slowly, and then quickly [laughs]
my YouTube channel took off and now I make my own money
and I can buy socks whenever I want!
and treat my wife to lovely dinners and pay for my own medication
and not have to panic that at any moment the government are going to come and tell me off and cutting off the money that is keeping me alive
every ad, that you're watching my videos, every merch item purchased
every Kofi donation, everyone's signed up to Kellgren-Fozard-Club
- and I'm especially grateful to you for providing me with a regular monthly income -
helps me to be my own independent person
and it is hard to talk about money when you're British
so this is - this whole video has been very challenging for me
erm, and it is also difficult to talk about money on the internet
when you make your money through the internet
but please know that I'm so incredibly grateful to all of you
thank you. for helping me to live my happy life to the best of my ability
please share your own stories and what the situation is like in your country in the comments below
subscribe if you haven't already and I shall see you in my next video
thank you again
[blows kiss]
[outro music]