I lost money when I got married [CC]

I lost money when I got married [CC]


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]

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100 thoughts on “I lost money when I got married [CC]”

  • *CAPTIONS CURRENTLY SYNCING*
    Thank you so much for watching and for being such an amazingly supportive online family. Please share your stories too <3 xxx

  • My wife and I moved to England a few years ago because 1. England needs teachers and so teachers fresh out of school (my wife and i) can get a full time job no problem and 2. Ontario, Canada, has so many teachers that you're stuck on a supply list for years. We soon found out this is because Canada's opinion that teachers are valuable professionals worthy of real pay and benefits is very far from universal. England not only has a terrible, archaic school system which has you filling out paperwork more than teaching students, it also pays so poorly your students in retail jobs make more than your hourly rate. And also you get to watch students have the joy, creativity, and personality drained from them and there's nothing you, small Canadian, can do about it. But that's a different story…

    My wife has Rhumatoid Arthritis, and because it has been in remission for 3 years (not gone, but not active) and there were no signs of the medication failing her – and that we paid 4000 pounds up front to both be a part of the nhs as a part of our visas, yes, immigrants pay for the nhs up-front – we figured it wouldn't be an issue.

    Yeah. Right.

    The nhs decided her medication was too expensive, and so even though we were prepared and did our research, it took 6 months past the last dose of her medication we brought with us for her to get another dose. She had to wait for a specialist to fill out the right paperwork and make a 'case' for her to get her medication. The medication that allows her to actually walk.
    Medication which we now know stops working if you stop taking it for any length of time. But nobody told her that. Even after she got her meds, she wasn't feeling better. Her feet and ankles have ended up irreparably damaged because she just kept going and tried to convince herself she wasn't in pain. She HAD to convince herself she wasn't in pain – we were immigrants, and we certainly couldn't survive on my pathetic salary alone. There are NO social safety nets for immigrants. You're hurt/ disabled? Go back to your own country. That sentiment couldn't have been louder and clearer. Even though there's no way you could make the case that we were "stealing resources from citizens"; we paid into the nhs to be on it in the first place, we were there filling job roles that desperately need filled, and the reason she couldn't work was the health system itself.

    We planned to do the work abroad thing for 5 years on an ancestry visa. We made it a year and a half. She was 60 percent of the time in a wheelchair by the end, and my mental health finally snapped and I ended up in hospital after a suicide attempt. The dr gave me a pamphlet for a therapist and sent me home the same day. That was the final straw. Friends and family helped us get home and pay off all the rental/ phone/ other contracts we owed money on. She only learned that her meds would've have stopped working when she went back to her doctor here and he explained that going on and off those meds makes them inneffective. No nhs dr told her that, they just sent her for more tests and said that "nothing was wrong". Here, her dr said that her illness was more active than when she was first diagnosed.

    We've been home in Canada 6 months and while she is on the mend – no more wheelchair, she has supply teaching jobs sometimes, but still lots of pain – I'm suffering some pretty intense ptsd. Ptsd. Dealing with British government organizations gives you ptsd. So now I get to navigate the Canadian social services system. I did have a job for a few months when we first got back, but another suicide attempt later and I have no income. But I do have a psychiatrist, which is more than the nhs did for me. We've come back after a year and a half in England in more debt and more broken than when we left. So yeah. England treats people who are I'll like garbage. They honestly just want to throw you away. The systems would probably prefer you to live in poverty/ not have access to help/ die, because then then don't have to deal with you. It's like they want you to fall through the cracks. Once you fall then they'll just bury you in the crack and pave over it and hey, problem solved right?

    At least it's made me seriously appreciate where I'm from. I'm home, and Canada might be kinda boring and the waits for anything medical are ridiculouly long, but I'm never taking her for granted again. At least here it feels, so far, like the systems are trying to pull me out of the cracks and dust me off.

  • Knowing your limited on being able to work and therefore limited on income sucks. But this video did make me a little more grateful for the disability money and health insurance I do recieve from the American Veteran Affairs. They fortunately will increase my money if I get married or have a child and I can never loose loose it due to my income. They also cover my medications and health insurance which I know saves a lot. If i didnt have all of that I can survive on my own and would have to depend on others. The va defently havs its problems but it defently has helped.

  • What always gets me is how companies can charge for "disability essentials" as because they are essential they can bump up the price because we don't have a choice in needing them and the NHS only covers a small number of disability essentials and don't get me started on the price of a better wheelchair than the ones the NHS can provide!

  • This was heart-breakingly touching & true…thank you for expressing what I've felt & endured for some years. Blessinsg! Q

  • Here's my super duper long story.

    I'm classified as permanently disabled since 2011, due to degenerative disc disease, osteoarthritis, psoriatic arthritis, fibromyalgia and enough hypermobility that POTS has been looked at, plus a boatload of permanent mental health things I won't go into. I worked full time from the time I was 18 until I was 34 and everything I just listed reared their ugly heads one after the other over the course of 6 months. I went from fully functional to someone who scarcely leaves the house and deals with boatloads of chronic pain.

    It took me years to get approved for my SSDI benefits. I, like approximately 85% of ALL APPLICANTS, was initially denied by the Social Security Administration and had to appeal. From January through September of 2013 I was drawing unemployment from the horrifically shite job I'd worked for the prior 5 years. After that, I literally subsisted on $198/mo in food benefits and another $194/mo in something called Aged, Blind and DIsabled benefits (ABD is specific to the state I live in, this state in general is very Liberal and has more social programs than most here in the US). I had to basically be the live-in house mom for two different, unpleasant and unstable housing situations until I won my appeal in October of 2015. I got my back pay, and used it to pay the promised "back pay" rent that I owed, as well as some bills. Most are still defaulted on my credit record; I won't even begin to be able to recover my credit rating until 2022 when all but a crap ton of medical stuff drops off. This will mark the 3rd time in my life I've had to start over with my credit, and I am weary thinking about it.

    My big SSDI win? I draw $1153 a month. That's it. I "make too much" so my food benefits have been cut from $198 a month to $15 a month. Average rent here is higher than the entirety of my monthly check; I had very few options for housing, it was either apply and hope to get into a HUD subsidized living space–which can take literally 10-15 YEARS on a waiting list–or continue living with roommates. As I was 38 damned years old and sick of being House Mommy, I wanted my own damned space. I got lucky, I finally got in at an apartment complex that is limited to aged or disabled people. I think they were/are trying to get more younger folks in, so my wait time was ONLY 18 months.

    So now I have my own housing, yay. Electric is cheap, water and heat is included in my rent. Tiny little one bedroom apartment but mine alone. I have a steady income now. Not a bad gig, right? Well, no. Chronic illnesses mean I have to go to doctors a lot. I get coverage through Medicare, and I am JUST under the line to have my Medicare Part B premiums covered by a state program. Every time I see my PCP, it's $10 bucks. Specialists, $50. I see a lot of specialists. Don't get me started on how many medications I have to buy every month. So I thought, "Hey, I'll go back to work part time, make a few extra dollars so that I can actually have more than $0.36 in my savings account." The SSA said "that's fine, we won't touch your benefits so long as you don't make over $1500 a month". Well, that would never happen as my body is incapable of working for very long. But here's the kicker: I am at the very top cap of SSDI income to get that extra help with Medicare Part B. If I earn over an additional $64 a month, I lose the assistance entirely–there is no sliding scale, of course not–and I'd end up having to work more hours to pay for the Medicare premium, and basically end up working my butt off to have even less income coming in. So there is literally no point.

    This system is designed to keep you in poverty. I don't understand why we, the impoverished ones, are punished for trying to do anything better for themselves by virtue of literally being made MORE POOR when we try to.

    Oh, and if I were to get married? Yeah, I'd lose a lot there too, just like you, because my partner would be expected to pick up the slack for me–their income would be considered mine. It's insane. I'm only 40, currently I'm single and assume I will be for the rest of my life–and I honest to god am just so tired when I think about having to not even LIVE, just EXIST in this limbo of poorness, single and in constant chronic pain, for another 30 years or so until I die. It's no way to live.

  • I'm cryinggggggg you and your wife are so sweet imma subscribe and watch every dang ad available! The system is always biased and it's impossible to have a perfect system that supports everyone so I'm glad you have YouTube and I'm glad you can stay with the love of your life!!! cries happy tears

  • At least you do have a welfare program, hahaha. I am hard of hearing and I get like 50 pounds a month. Were I fully deaf, I'd get 125 pounds per month. The room I rent costs 240 pounds, and this is cheap, so… but yeah, that kinda welfare does not get taken away upon marriage, so I got that going for me, which is nice.

  • Thank you so much for making this video! I teared up while watching. I am personally not disabled but my partner is and it has a huge impact of our life. They can’t work (because or mental things and welfare things), can’t save money and can’t leave the city. We are now long distance because I had to move away and they legally cannot come with me without losing all their subsidies, including subsidies on the pills and medical care that literally keep them sane and alive.
    The world is working against the poor, the sick and the disabled and no one even knows this.
    THANK YOU SO MUCH TO TALKING ABOUT THIS.

  • My husband has been disabled most of his life with server seizures cause by a cyst on the brain and was on benefits. Neither of us knew that getting engaged and me moving in with him and marrying eachother would result in all his benefits being taken off him. I remember having to go to the council office and giving them all my information and financial details. I felt so guilty for the first year that by marrying me he lost his income and independence and my minimum wage barely covered all our bills etc. I was literally broke the first Christmas we were married I had to ask my parents for help to pay rent at start of January. We had to fill in do many forms and fight for my husband to get PIP thankfully he gets the largest amount for both parts now but that only started to come in after our first anniversary. He hated the whole process of defending his disability he does not want to push for any other help this is what the government does the penalize disabled people for being happy and make you dread the whole process make both people feel guilty about the stress each feel they have caused the other and the government wonders why people on minimum wage are relaying on food banks etc. Thank you for your video it's good to know we are not the only people who think this treatment is unfair and disgusting.

  • I feel you deeply, Jessica. I can't marry my love of nearly 23 years, not legally, because I live in the US, and my work career was 2 quarters (six months of work) shy of being able to get SSDI. I'd actually worked that much and more, but while living in Canada and silly me, I didn't pay taxes to both countries on my income.

    So – I pay them rent, and buy my own food, and hope I don't outlive them, because I'll lose everything. $750 a month won't even rent a shoebox sized apartment without a kitchen here any more and the waiting list for subsidized housing is years long.

    I thought we were going to be able to get a registered partnership once I turned 62, but it turns out that the federal government decided to take that small comfort away from poor senior citizens, and considers it marriage for tax purposes. So I'd lose all my benefits that way too. Not half of them, all of them, including medical coverage. That's the biggest difference between the US and Britain, or Canada, or pretty much any other sane country. Luckily, my daughters are both dual citizens and have been able to move to Canada. Too bad I can't join them.

    If you ever do make a "Polite British Rage" shirt, consider doing a Canadian version too, my daughters would (politely) wear the he** out of them.

  • Thank you for sharing your story and congrats on your anniversary!
    I am American, and I grew up below the poverty line in my state. Our income was less than $15,000 per year, before taxes. We were a family of 3, and yet, we did not consistently qualify for benefits. Since my mother's income varied by sometimes as much as $300 each month, and the way it used to be (late 90's early 2000s) was that if the family income varied more than about $150, pay-stubs from that month would have to be submitted, to determine the benefits for the next month…… So my mom would work most of November, so we wouldn't qualify for December though she could only work 5-10 days of that month, but we would then qualify in January. It was the worst in the early summer, since the schools let out in May/June. She would work as many days as she could in May, but in June, she wouldn't have any work and we wouldn't qualify for any assistance… usually she would budget for the tax return to keep us alive every summer.

  • So I’m in Australia, if I were to live with someone romantic the government would at lest cut down if not stop my payment. The funny thing is I have stress induced epilepsy among other disability, the government has declared me permanently disabled. With one of my disability can cause me to break my finger if I use a pen to hard. So yes they in fact would make my condition worse if i choice something that should be a human right to find love and live with someone.

  • I needed this. I needed to know it wasn't just me. I've just had this happen to me and my partner in Australia and the address is caused on-top of being in pain every second and going to hospital. He cannot afford to support us both, and I'm now given $0.

  • I live in Ontario, Canada. Many people think that our OHIP (Ontario health insurance program) available to everyone is great, and it can be if your not struggling with a disability (long term or short term) and your under 25years old. Ages 24 and under now get free prescriptions, and this happened when I was 23years old, and the main struggle is getting a proper assessment or diagnosis and the government believing you require help. I'm not considered disabled because mental health is viewed differently, which is a struggle and was even more so in the next year following my back surgery since I wasn't fully able, but it wasn't long term. However, my accommodation for 6months after were expensive for my parents. Even with my dad's benefits and what little OHIP covered, my hospital stay costed a lot and then mobility equipment we rented was accumulatively well over $1000 easily for something I didn't choose to go through.

    And then my autistic sister, who has a very very hard time relating to people or even talking to people she doesn't know, isn't considrred disabled enough for a livable amount of help. Never mind that her doctor has also done everything he could to help her get any assistance she was able to get. She can't handle social situations as most people confuse and stress her out to the point where she becomes nonverbal and has a meltdown emotionally, which is extremely draining for her, so clearly with customer service jobs being 90% or so of what's available to an 18year old with no previous experience, she would not be able to do that. Still as her expenses would grow in adulthood her disability income has decreased because the government believes that she is able to to function enough to have a normal job. She barely has spending money that won't even cover groceries. That's without any bills and my parents help. Even getting assessed is alot of money. She doesn't have any accommodations like a therapy pet, special tinted glasses that would help colour and light sensitivity, etc. The doctor says she should though.

    I feel all systems could do more to help those who need it most. It is sad really, as I've known so many people to struggle with illnesses and disabilities that aren't always obvious and be rejected any and all accommodation they require unless they could dish out extra money, because they aren't disabled enough. Still, I know we have it better here than in a lot of other places. And on a good note, almost 7years post op, and I'm doing well and still get prescription coverage for another few months. It's a good thing I was able to get a job with benefits, though they won't help my family since they aren't my dependents.

  • thank you for this.
    gostaria que esse vídeo fosse traduzido para o PORTUGUÊS (BRASILEIRO).
    Could you translate it so I could share it with my family in Brazil?
    Isa

  • I'm terrified I'm going to be took off my esa next month I'm up for a medical assessment (again) and even though my doctor who I see every three months since 2016 says I can't work they might say I can even though they only see me once for like 30 minutes so what my regular Dr and therapist say is irrelevant.

  • I just wanted to say that I LOVE YOU TWO SO MUCH!!! You’re real, GENUINE people!! You’re nice, funny, and have a wonderful outlook on life. You’re such an inspiration!

  • Currently not married for this exact reason. Can't afford it. Also, I don't think it's a good thing to have to be dependant on a single person no matter how great they are. I don't want my husband to carry that sort of a burden. And I have shitty self esteem as it is even without having to rely on someone for my livelihood. At least when it's benefits, my costs are shared by so many people no one person has to carry all of it. It's a little easier for me to live with. I'm from Finland so I suppose I'm luckier than most. I feel like I shouldn't complain. But yeah, it sometimes irks me to know I can't have some of these relatively basic things just because I haven't been able to find a job I could do with my (albeit mild) disabilities. :/

  • hi Jessica I too am on esa and p.i.p, me and my partner had to make the hard decisions to "split" as he didnt make enough money to support us both, we have been together for nearly 7 years. I have disabilities that will not get better but the p.i.p people dont seem to believe me, they think being diagnoses with arthritis at 26 (I'm 28 now and can hardly walk) and autism(a life long condition with complex needs) and needing carers (who I have to pay for my self as I dont qualify for help from the local council) is something that will get better! and these stupid rules mean we cannot go any further in our relationship (get married/move in together) 🙁 , I am my own person!! esa (support group btw) is there to supply you with what you could get when working, so why would me being in a relationship suddenly mean I'm not entitled anymore? luckily p.i.p is not means tested but I had to go through an 18month fight to have p.i.p given back to me after they took it away saying I was better, this in turn made my mental health deteriorate massively and made me worse than when I had originally applied (after all that stress I was in thr tribunal room for less than 5 mins and the judge said she had no idea why this was ever taken away from me!! 18 months of worry stress and meltdowns for 5 mins and given it back) 😖 more needs to be done to stop disabled people being penalized for actually finding someone who will love them, as it is incredibly hard and can leave many alone their entire life!!
    love you you are amazing and inspiring and I share your videos with all my friends xxx

  • The perpetuation of poverty amongst the disabled population is is abhorrent, thank you so much for enlightening people to this issue!

  • As a disabled person in the U.S I wanted to say thank you for mentioning and for researching the flaws in the system. I am only able to go to school because the tuition is paid for but that could be taken away if I so much as date someone. Good thing I am alone! self-deprecating laughtrr

  • My fiancée and I are getting "married" next year. We're having a ceremony without getting a certificate because she's disabled and she'd lose her benefits if we did so. sigh It's extremely upsetting but I feel a little better after watching this video. I've always known that other people are going through something similar, and worse, but hearing it from a YouTuber I respect means a lot. 💖 Thank you for continuing to share your experiences.

  • Me and my partner are facing this issue as well, only that BOTH OF US are disabled and completely housebound which means the allowance we'd get from the government is.. well more or less half and then that amount is halved again. It absolutely sucks that we might have to consider not getting married or live separately just cause we want to have somewhat decent of an economy because we sure as heck aren't allowed to have one if we live together or share rings. We're from Sweden, btw.

  • I don't buy merch as a general rule, because I'm actually in the process of clearing out clothes that I can't wear anymore and — er, that's neither here nor there. I'm not sure I 100% need another hoodie. But. One of my absolute best friends has a significant mobility disability, and I'm ashamed to say that I have absolutely no idea whether any of those things you're describing applies to her. And I suppose I could just ask her, but I'm going to sublimate and do retail therapy instead … possibly my Canadian version of smile-screaming. As a bonus, I get to support this channel, which makes me feel really good.

    ETA: Ooh! Canada! One of these days we'll actually see winter again, and then I will need a nice new, sass-themed hoodie. So! Moral dilemma solved, win all around. Except for the part where I've been a crap friend, apparently, but hey. Baby steps.

  • My parents can't get married because my mom is disabled and if they get married, we won't have money for the drs or we won't have food.

  • I cried watching this because I related to so much of what you said. The system is SO frustrating. I lost my job at the start of the year due to my mental health, about 7 months after getting married, and I've realised that the amount of jobs I can actually work is very limited. I'm on Universal Credit under the Limited Capability for Work Related Activity group, but my entitlement is disproportionately affected by how much my husband makes a month. He's paid hourly and works unpredictable hours to say the least, so we never know what kind of financial situation we're going to be in from month to month. For example, this month I'll get no benefits at all because he had a tax refund, whereas some months I'll get £600 because he was only able to work his minimum hours (but he would obviously get relatively little in terms of wages). It's incredibly stressful. On months where I get little or nothing I have to ask him for money to live on and cover my own costs and I'm not able to contribute to household costs like bills and rent, which makes me feel so guilty and dependent. Like you said, it introduces a really weird and unhealthy dynamic into the relationship. (As an aside, I also got turned down for PIP, the only non-means-tested benefit you can get in my area, because they "found no evidence" of my mental illness affecting my life. Apart from, you know, all the painful and traumatic stuff they made me discuss during the assessment only to ignore it.) Thank you so much for addressing this. X

  • I’m from America and have type 1 diabetes. Here, health insurance has the ability to change treatments for diabetics whenever it makes them more money, without any care for the people it may affect. Another reason the healthcare in America is skewed is that once you turn 26, you’re kicked off your parents’ healthcare and diabetes is considered a pre-existing condition, meaning insulin, the medicine that keeps us alive, isn’t covered by insurance. This can lead to people rationing insulin, a highly dangerous practice which, while conserving insulin , also means that the people doing it are being put in danger because they aren’t getting the medicine that they need. I’ve heard multiple cases of people dying from insulin rationing. The alternative for this is paying upwards of $1000 a month for a drug that hasn’t increased in price to make since it was invented in 1922 (that’s $2 a vial, if you’re curious). All of this to say that the healthcare in America is highly skewed and, as someone who is still dependent on my parents for medical supplies, I truly fear what will happen to me when I can’t be on their healthcare plan.

  • Yup. Many don’t legally marry and most people who I paid to help us, told us to divorce and how dare we expect to have income and disability!?

  • I'm in the U.S. and am disabled due to a car accident over 20 years ago. I was forced to stay living with my mother who was abusive because I simply didn't receive the money I needed to be able to escape. I couldn't even afford government housing. And even when I called for emergency help when things got even worse I was told no. And due my my not having children I was not eligible for housing assistance. I was only recently able to leave the situation because I am engaged. But I am not allowed to be engaged or married because I will lose part of my income, most of my insurance, and my food stamps if they knew. So I will never be able to be married to the person I love. I live in fear of the government deciding that my living arrangement is more than I said and that we will lose everything and have to move in with my mother because his income is not enough to keep us afloat. As far as the U.S. and state governments are concerned, people like me just need to die off because we are a burden no one wants. You would have thought that with our governor being disabled himself he would want to help us, but no, he has actually done more to hurt us than any other before.

  • I love love love Lucy Worsley. She came to my country and I cried because I couldn't meet her. She did an entire show on beds and I watched it. I'm not even British or European and what she was talking about had nothing to do with anything that happened around me.

    Also I love it when she dresses up for her documentaries.

  • I’ve watched every single Lucy worsley documentary I could get my hands on she is a delight and I’d be SO EXCITED if you had a gig like her!

  • So, on the American facts:

    Difference between SSI and SSDI. Both are programs for disabled, but are different.

    The main difference between Social Security Disability (SSDI) and Supplemental Security Income (SSI) is the fact that SSDI is available to workers who have accumulated a sufficient number of work credits, while SSI disability benefits are available to low-income individuals who have either never worked or who haven't earned enough work credits to qualify for SSDI.

  • Interestingly most on SSDI will no longer qualify for SSI or food stamps. I qualified for SSI during the 2 years it took to get my SSDI benefits approved. That's right – 2 years, 2 appeals, and lawyers.

    But I stopped qualifying for SSI once the SSDI. And, they took the full 2 years to decide if I qualified for the money and food and medical benefits that was supposed to keep me afloat while I waited on the federal benefits (SSDI). I instead got a back pay check, but for 2 years, I had to depend upon the generosity of friends and family to house and feed me, and ruined my credit to ensure I kept seeing the doctors to prove I'm still disabled the 2 years it took for them to approve me.

    But now that I have SSDI, I now make too much for SSI, Medicaid or food stamps. Yet SSDI, based off my previous work credits before I got sick, isn't enough to pay rent, etc. I do get Medicare (federal health coverage which pays 80% of basics). But I'm in a gray zone of making too much for additional benefits, and not enough to actually live even in a cheap studio.

  • From Canada. Both hubby and I have become dissabled since getting married in 2016 as well. Mine from multiple injury and trama and his from complications on a routine surgury and almost dying… him with Fibromialgia. Me with Hashimodos, CF, Hypermobility and Fibro. Dissability bennefits in Alberta are called AISH and/or CPPDISS we also have the dissability tax credit. They are all a pain to get approved for and also to apply for. We are surviving, not thriving. My love also had dissability insurance just in case something like yhis happened and it has been back and forth with them for over a year. I feel your frustration lady.

  • My husband and I are both disabled. Before I picked up his overnight caregiver hours I was on the dole. If he earned too much, I lost the dole for that week. I was literally living off my husbands income from a CASUAL retail job that had only just started paying him after a year of work. That's not enough to support ONE person, let alone two people, two cats and a mortgage. Disabled people do not have marriage equality. It's almost illegal for us to get married.
    Also: If your partner needs a caregiver and you qualify to be PAID to be said caregiver, don't wait, don't hesitate, don't just sit there and think about it, GRAB GRAB GRAB GRAB GRAB any opportunity like this. Even if it's just temporary. You may need to lawyer up first to hold a company's hand through their own legislation to find that, nah, there's nothing in it preventing a spouse from being paid for this. It almost saved our lives.

  • In Ontario, Canada, I receive more from the disability system (ODSP) as a single person than my ex and I received AS A COUPLE.

    Somehow two people are expected to live on less than what one person receives. ODSP has a fun policy where they can arbitrarily decide if two people sharing an apartment are in a common-law relationship after 3 months. It doesn't matter if you actually are, if you have a two-bedroom apartment, if you're the same sex: if they want to, they can force two people to rely on each other financially just because they cohabitate after only 3 months.

    When we actually broke up and I opted to move out of our apartment, I was expecting to receive my own personal cheque so I could pay my rent at my new apartment. I received nothing. He received our combined cheque in his name and told me that I'd have to borrow money to pay my rent, because obviously the one cheque would not cover two rents. I was told I would not receive a cheque until I could prove I was moving out, except I had already put a last month's deposit on the apartment I was moving in to and provided all necessary paperwork. I needed to be physically in a different unit before they would give me anything for myself. This twisty fuckery means that people need to move WITH NO MONEY before they can receive money.

    Once ODSP decides you're in a relationship, leaving is next to impossible.

    I now pay 75% of what I receive/my self-employment income towards my rent every month. The recommendation in Ontario is to pay 30%. Because of how many rental agencies use this formula, they can legally decline to rent to people who are on ODSP (which is ACTUALLY ILLEGAL, discrimination against the disabled and a violation of human rights), especially in bigger cities (like Ottawa) under the guise of "concern" for rental payments. Despite this struggle, I can't possibly put myself in the compromising position I was in 3 years ago. My rent crawls up 1-2% yearly, my benefits stagnate thanks to the newly elected Conservative provincial government. I'm in literal fear for the federal election this month.

    Being disabled is just great fun 😁

  • Thank you for sharing this. Your insights and commentary on the American benefit system is spot on.

    Also, your wedding montage is everything. <3

  • FYI SSI is very hard to get on, unless you find a doctor that is willing to show up/write a letter telling how disabled you are. Good luck with that. I have been trying since 2000 on and off (because live and illness), and still am denied at age 46. The person who lets the judge know if there is any work you can do with your disability based on what medical paperwork you bring said there are none, but I still got denied. Any money that would add on to SSI, like my previous work history does not exist because it now is over the maximum of years since I last worked to be applied. I figure by the time am I 50 they will just put me in with the aging population (who I adore anyways)… wonderful.

  • This also applies in Australia to an extent if one partner is out of work, you're expected that it's your job to somehow supplement their living expenses just because you're living together and of course you live together to save money to begin with but one person is left paying for all the food, all the transport, so the other can go to those interviews (only to be told after years of being sent to unsuitable job trials that "you should be on disability"… Like they didn't know he had a condition to begin with? Thankfully after a period of horrible depression, and a few horrible jobs, he found a job that helps rather than hurts) and what if both partners are unemployed and you're meant to live on reduced benefits even though welfare hasn't been increased since 1980? The thought of medical costs on top of that (partner, grew up poor, avoids going to the doctor at all even when he's sick so I paid for that too so he could get help, not that anything did) is shocking.

  • This made me cry because I love my girlfriend so much but I live in America and I honestly think she should be on disability because she has memory problems and chronic fatigue and so many problems too but it’s hard to show she’s eligible and I do want to marry her and just. I’m so terrified of the future. I want to be able to take care of her.

  • As someone who also has quite a few disabilities I completely agree with the rant in this video. I live in the US. I can't get on SSI until I'm divorced and neither can my wife, all because we don't live together and they automatically assume that it means we're both just pretending to not be together anymore to get more money. Also, I'll never be able to marry again if I want to KEEP that aid once I have it.

  • As somebody who lives with someone who is currently disabled and can't work….I feel you on this rant. My husband's disabilities have prevented him from obtaining and keeping a job for years now. He was able to stay on his parents' health insurance past 26, which has been the age where one normally needs to obtain their own health insurance coverage in the US. However, there was one caveat that he needed to live with his parents to stay on their plan. We didn't know that, and neither did his parents. He moved in with me. 7-8 months later we found out that if the insurance company found out he moved out, not only would his insurance be retroactively cancelled on the day he moved in with me, but his parents would be forced to pay back the full amount of every single medication and treatment he received from that point on. Hence our very hastily planned wedding last year, so I could put him on my health insurance that I get through my work. Unfortunately, my health insurance is terrible, and only covers a small percentage of each of his treatments and medications. Which is funny (not really) because what I pay each month for insurance tripled when I added him to my plan. Add on top of that his medication doesn't have a generic version…..Yeah, it's been difficult.

  • SSI here in the U.S. also cuts off your payment for the whole month if you are hospitalized for, if I remember correctly, 20 days in a row. My son, at 17, had cancer and was hospitalized twice for five and a half weeks. SSI cancelled his payment both times.

  • Thank you for making this video!!!!✨ I'm in the states and it's pretty shocking how arbitrary the rules are. For instance, some disabled people have to buy multiple side insurance programs to "prove" that they contribute….🙄 The government could just request that as a payment or dock someone's benefits but no; instead, some people purchase five dental plans! So outrageous, confusing, offensive, etc. For me personally I'm experiencing a challenge getting a new disabled parking placard that my specialist told me would JEOPARDIZE HER MEDICAL LICENSE if she signed for it. What?!? 😩 💔 With EDS I sometimes use crutches but because I'm not using them for a replacement joint I don't "qualify" for disabled parking because it's not a stereotypical mobility disability?? So even though I only use it on days I really need to because of dislocations that's caused injury I'm too healthy to park closer if I'm in excruciating pain. So great. So wonderful. It also doesn't help that I have a vagina instead of a penis. Yay for misogyny! 😩💔

  • 11:49 We don't know why America is stupid. We're just America. We're used to being stupid and…. Judgmental and horrible at justifying good and bad actions.

  • Everything you just said is really fucked up as an able bodied above poverty line American I’m really bothered by everything you said. Wtf….

  • Wow.. I’ve been having a binge of your videos and this really hit home for me! Not in the marriage sense, but the stark reality of the system (or lack thereof) in which we live. After sustaining a severe traumatic brain injury in 2016, I was left unable to work for some time and living on £89 per week. With rent, bills etc to pay for. I went back to work WAY too quickly, because I was in such a terrifying financial situation aged just 19. It was scary. I did then suffer the repercussions of returning to work too early through being unable to cope with my fatigue and the return of nasty side effects from my injury.
    So, I took a year out. I moved to wales and lived in a van on the beach and did basically nothing, just basked in sea air, no noise, limited interaction with friends/family. I managed to build myself up from there, slowly adding more work when I was able, learning how to deal with noise and speaking to people.
    Now, three years on, I am sitting at my dressing table, in new pyjamas, typing this on my iPad I bought for myself, married to the love of my life and I can whole heartedly say that I am proud of where I am today. I still have days where I think I might be doing more than I should be and days where I can’t comprehend the ridiculous lack of support for disabilities/injuries/low income… but I’m here and I’m so thankful.
    I really wish that the system was better. It needs a good shake up methinks!!

  • Me and my partner have to live apart for these very reasons 😢
    I'm so happy for you, not having to feel like a financial burden anymore!
    I adore your videos and thank you for all the talks about disability and other tough subjects. 💐

  • My husband and I fall into a crevice in the system where we don't make enough to be comfortable, but we make too much to receive any form of assistance. We are in Maine in the USA. We bought a home in a dying town over a hour from where we had been renting for 10 years, away from all our friends, because the houses in the dying town (it was a two paper mill town and one mill shit down permanently, and the other one has downsized drastically, so there are very few jobs) are so much cheaper. The house we got here is half the cost it would have been in the town we made our home in for a decade.

  • I’ve been disabled from birth… when I married in 1990 my ssi was dependent on my now ex-husband’s income.

    When we divorced in 1998 I went on “dependent” child benefits.

    (I am legally blind due to glaucoma and have been since birth but my parents… specifically my mother refused to file for ssi/ssdi or any “hand outs” like food assistance… I was forced to medically retire in 2008 as my lupus, Crohn’s and fibromyalgia worsened… I was allowed to make a certain amount while working but not a penny more…

    My oldest son Is on the spectrum and his wife is bipolar and when they married she lost her ssi… living on my son’s meager ssi doesn’t even cover their rent let alone utilities… car insurance etc. They are currently trying to have her disability reinstated but it’s a slow process. He talked about getting a job but his autism and anxiety hinder him… he picks up some small jobs in the building they live in so that “helps”.

  • The first min and 50 seconds required me the pause and laugh my ass off for a quick moment before continuing. Jessica I love you

  • Ah yes got to love benifits… My husband and I are both disabled. Myself "more" than my husband. Yet I got thrown off of ESA because they felt like it, as a couple automatically were given £30+ less a week. Currently waiting on pip yet again. After losing part of it last time why because apparently only physical issues made it into their assessment. I have multiple sclerosis.
    My husband is on the ESA "try to get a job". But lucky bam cares for me 35+ hours a week.

    We get in total like £12-15,000 a year. For two people! I'm soo greatful of the NHS wheelchair service. But yup they don't provide adaptions to self propelled which would be cheaper than an electric! So dumb me and poor husband have to find £5,000 somewhere to fund electricwheels or the like.because out tiny council house can't handle a full electric chair. Oh and the chair Neill be ready for Christmas. Merry Christmas youve got a useless chair you can't push on the bad days like you need it for.

  • I'm in the us and know many disabled people who were completely cut off their disability when they got married. I guess if your spouse is a millionaire I could understand that but not when they make 30,000$ year. It's so wrong.

  • As for the NHS why certain conditions give you free prescriptions for life due to maintainence requirements other conditions that are far more intensive, very pain and require alot of upkeep require £100+ a year for what keeps us alive…