Around the Bureaucracy in +80 Days: 5 Weeks in Hell — Where is Em?
TW unaliving, self harm, harmful thoughts, domestic violence, depression, systemic abuse and the factors that drive/prevent it systematically in Sweden, from one perspective
Part I, the Austerity Measures
Foreword
Today is March 26th as I start writing this, but I am doubtful I'll finish this draft tonight, or this week. When I publish, it might be tomorrow, or the week after, or never. I won't know until this is formulated and I hit post.
The title is a reference to the book "Around the world in 80 days", but the similarities ends there. I just needed a witty title to my experiences, at the expense of a preexisting work.
The State, the Laws, the System
So let me begin as far as I can go back. Because this story is not about me, but about the system around me. The attitudes, the support, and the erosion of it that caused such a thing as mass suicides among vulnerable citizens.
It begins in 2010, our government has become moderate. Some quiet changes has been made to the welfare and benefits system. There is a 180 day cap introduced to the sick pay. And 2012, a specific kind of sick pay (sjukpenning, SP) is created for individuals who has never had a job. The catch?
This is a bottleneck, specifically designed to make it as hard as possible for people entitled to "disability reimbursement" (sjukersättning, SE), formerly called early retirement (förtidspension). If you are below 30, you'd have "activity reimbursement" (aktivitetsersättning, AE).
It's about saving money either way.
The idea is that you would go from AE to SE if your rehabilitation hasn't been fruitful, but you might be placed on SP until you have done your trials. However, while AE & SE have about the same pay (it's adjusted for inflation), SP is not. In the later years, SP has been used to deny people AE as well, due to the 180 day limitation, causing people to become "uninsured", as a way to lower the statistic for people on benefits.
The Numbers
SP, 100% disability is fixed 160 sek/day, no adjustment for inflation
SP has a housing benefit with a cap of 7000 sek, that supposedly is paid the month after (this is what I'm told)
AE, 100% disability in 2023 was 568 sek/day, adjusted for inflation
AE has a housing benefit with a percentile coverage based on cost between 90-75% of your max rent, and is paid the same month
AE also comes with expanded rights to activities that promote rehabilitation, I'm unsure if SE includes this, SP does not. But realistically, with the crashed housing market, and increased rental costs, not even the smallest benefit can cover comfortable living for a disabled person. As in, assistive fitted tools, medication or adjustments. My own numbers were abysmally small by themselves; SP alone was 2560sek (due to delayed/refused housing benefit) and supposedly, at full reimbursement only yields 3712kr, and AE was 11928 (plus a housing benefit of 75% coverage in June 2023) allowed for a much better living standard. The issue lies in the daily allowance; AE is 350% times higher than SP, and SP is well below the minimum existence level. The system is designed to be punishing and harsh, so that people stop being "lazy" and go to work. I'll get back to this in a bit.
Too Sick to work, Too Healthy to be Sick
There is a saying here in Sweden that "you have to be healthy enough to be sick". Damned if you do, damned if you don't.
Along with these statements each state agency behind this has their own derogatory names; Försäkringskassan "Förskräcklingskassan" (akin to "antisocial nonsurance system", more literally "horrible insurance") and Arbetsförmedlingen "Arbetsförnedringen" (Public Humiliation Service, or literally "work humiliation"). I'll just refer to them as FK and AF from now on though, but there is a reason for their "names".
The purpose of these bottlenecks is that our government has since the new financial policies from 1993 that decentralized some institutions (read privatized), decided we need to cut spending on welfare. It's only in 2010 that our government realized the plans, and we now in 2024 have record low reports of people living on welfare.
There is a reason for every number, and the bad math is on full display (this is the so called "9. 0 goal", referring to the median days of sick pay being paid out). Post 2010, there have been reports of people either dying from cut assistance, or simply choosing to end their lives when they have nowhere to go.
Erland, 55 (2018)
Johan 35, (2021) (Source #2)
Sara, 33 (2019)
Linnéa, 22 (2020)
These are only a few names and articles I could pull under the search query "självmord försäkringskassan" on google (these are complete separate instances of welfare from the entire chaos that are the migration policies, although sometimes they overlap). There is a staggering amount of articles, that again and again state that a stable income is one of the foundations to improve mental wellbeing. And that the government knew that cutting welfare came with this risk. And... only in 2022 have they as much lifted the issue in the riksdag.
So why the hubbub? Why raise a fuss? Because aptly put — Sweden has invented a suicide machine, and I'm one causality.
News outlets are reporting of elevated suicide threats to FK staff (source #1, #2, #3, #4, #5, #6) and that the insurance system FK is disregarding the red flags. It's been reported that the case managers are actively encouraged to, or sometimes gets a bonus based on how many people they reject (#2), and has made it a competition in their office. They have also been documented as being callous, derogatory and outright ableist. They will even override doctors medical expertise to pull benefits and sometimes override their NDAs. Due to the toxic work environment, the government agency also has a high turnover.
As of today, Sweden has no legal clause to hold state workers accountable for such grave errors. It was scrapped in 1976, and replaced with a law that has less legal effect. You can report agencies to Justitieombudsmannen (justice ombudsman department), but it often has little effect. Even if you pull FK to court, and you win, they might totally disregard your case. In some cases they might demand a new court trial, in order to make you pay back.
What used to be jokingly memed about, "svensk välfärd" has become somewhat of a zeitgeist of a bygone era, where swedes took pride in sayings like "arrived like a letter in the mail"("som ett brev på posten"), "smooth as the train" ("går som loket/på räls") and so on. All of these referenced phenomena have since become privatized or decentralized with negative effects (#1, #2, #3).
Part II, The Time Frame to Disintegrate a Human
The Basic Understanding of Needs
It doesn't take much to totally annihilate a human and make them be void of any positive feelings of the self.
We can talk about it in terms of psychology, and use something simple like Maslow's pyramid.
The levels are (from bottom to top);
Pysiological Needs (Breathing, Food, Water, Shelter, Clothing, Sleep)
Safety & Security (Health, Employment, Property, Family, Social Ability)
Love & Belonging (Friendship, Family, Intimacy, Sense of Connection)
Self-Esteem (Confidence, Achievement, Respect of Others, the need to be a unique individual)
Self-Actualization (morality, creativity, spontaneity, acceptance, experience purpose, meaning and inner potential)
If we are talking about an already lesser-abled/differently-abled person — because let's be frank — without tools or assistance, some of us are unable to function, rendering us partially or fully disabled. This pyramid becomes the easiest way to explain the ableist droning of "why can't you just...", this is why.
A lot of neurotypical and/or ablebodied seem to lack the architectural skill of designing inclusive systems and societies that promote healthy growth, instead opting for some sort of stick. Usually in a similar fashion to people who say "my parents hit me and I came out fine", but reality is, you get a better growth curve with positive reinforcements and constructive negative reinforcement. Heck, even after owning only one elderly dog of 14 years, I've encountered these preconceived notions that "you can't teach an old dog to sit", mind you, he (the dog was untrained when I got him). Since then, he now knows a bunch of commands, and can almost perfectly heel off-leash. This is with a mostly positive reinforcement regimen, where negative reinforcement has only been used to teach him to avoid danger.
Enough side tracking, back to the main point.
The Calm Before the Storm
So how many days does it take to destroy a human through bureaucratic means?
About 90 days, if you count from my experience. I'll explain it.
It starts with being put on AE, because I was lucky to get on it before the 2012 reform. In Sweden, you also have something called LSS, which is summarized an anti-discrimination law of disabled individuals that includes neurodivergencies. This has mostly shielded me from most bullshit, until now, and allowed me quite a lot of support, which might be why I'm still alive.
Today it's March 27th. 90 days ago it would've been November 22nd, it's actually not that far from reality.
As I mentioned AE only covers you until you turn 30, and then you either have to
a) go into work rehabilitation programs or,
b) apply for SE, which with the new rules is increasingly hard to get.
Even though I could technically and legally qualify for it, my casemanager has told me that she will deny any applications I make. (I'll try to explain this later.)
Timeline Begin!
So in mid December I was scheduled for a "handover meeting", where my AE case manager gave me to a manager overseeing SP and a manager overseeing my case at AF. I had an assistive person attend from the LSS network, that helps specifically with work rehabilitation/education/occupation, abbreviated as EFA.
I was told the following;
My reimbursement would be less than now, but it shouldn't be a problem...
I'll be put on a work training program with AF to be an intern in active training...
I would get some paperwork sent to my home regarding rehabilitation reimbursement, RE ("rehab ersättning"), and was supposed to fill it in. However, I've forgotten the rest of the details, because despite my best efforts being neurodivergent, ND often means information overloading, despite keeping notes. (This will be relevant later.)
All government agencies will work together...
What I wasn't told;
But my reimbursement would be below poverty level, to the degree I could not afford any amenities, including medication to attend "training".
But I would have to apply to any programs/workplaces myself, while my case manager at AF does nothing but criticizes my efforts.
But my case manager at FK overseeing the SP would constantly use veiled legal terms and difficult words to delay or prevent me from applying to the right aid. She would sometimes flat out lie about papers sent, and misinform my social workers calling for clarification, causing paperwork to go missing.
But only in a way that would erode my energy, and in a way to deny me my legally approved LSS services. Claiming that I don't have the right to them and so on.
I'm getting a bit ahead of myself, so let's pull back a bit.
It's January now, so me and EFA draws a battle plan with AF, following the guidelines of FK. My month is mostly normal, I contact my doctor, apply for a new ID, take out my medications, work out, care for the dog.
Mid month, I talk with FK and get told what is going to happen. The only reason I know this is because my external memory is a notebook and a paper calendar with color coding. My notes from December-January state I was supposed to apply for;
a) SP with housing benefits
b) apply for SE if I can't work
c) fill in a form for RE and send it in
Don't report later than February 1st, and there will be a meeting with the case managers. To summarize, my notes are twice the size in bullets and span pages per meeting and task, each page with stick-ns and post-its (so you can see how easily someone gets overwhelmed).
Somehow I managed to get this step done, minus RE, because I forgot what the one prior case manager said (but it's still relevant to the story).
It's already just barely 4 weeks in, and we are already tangenting level #2 of Maslow's famous pyramid.
Oblivious to my abysmal future, I carry on, doing my best, trying to ignore the gut feeling (always trust it).
It rolls over to February, I send in the some papers, because I am not sure about what they mean. I couldn't apply in the end of January, and only in early February I understood it as.
Attend my doctors meeting to get the evaluation, and the eerie thing is this guy tells me "Em, from experience I don't think it will work, but they usually don't deny my extended applications for SP". I know he has his reasons of clinical expertise to make a judgement, and in hindsight, guy was right. I wasn't too invested in trying to understand the bureaucratic lingo, as I was in the middle of trying to combat a shortage on one of my daily medications, and I was more focused on solving that issue.
One problem less right?
Dead wrong. So from this day onward, in a picturesque description; it's like you start observing seismic activity on the radar, and you get concerned over the readings, before the actual catastrophe hits.
I keep going though, I wanna be good, I want to show I am a citizen of good standing. My performance anxiety kicks in. I'm placed at a dog daycare, and I make sure to be good with my boss. I never ask for accommodations other than asking that nobody eats peanuts in the kitchen, I use all my assistive tools (corset, orthoses, pain relief, psychotherapeutic medications, planners, custom shoes, etc.). I bring my dog with me initially to work, along with my gear. And I do good, at least I try. I make sure my dog behaves with their pups and help them organize/discuss stuff. Mostly I'm helping with the dog walks (relevant). This is from the 18th onward.
However second week, I'm told that my dog is no longer welcome due to new regulations, and that I need to start taking more/other dogs. Most of their clients are bully-type dogs, which is by no means something bad, but they are strong and have bullish willpower that requires a strong handler with the right physique. Just by comparison — I own a 3,4kg senior toypoodle that has been leash trained, and mostly walks off-leash as part of his training. The dog I was given to walk was a small French bulldog that was used to flexi-leashes and would run into oncoming car traffic any chance she could. I would describe her posture as frog-like due to the sheer pulling. She had a good nature, but horrible leash manners. It seemed she got worse when she was given shorter leads, which could be a sign of frustration.
Imagine handling that daily, intensively for 30-45 minutes. I think anyone would be sore.
On the 23rd FK finally responded to my claim. After being radio silent for a week. On the 24th they approved it, a text stated I'd be entitled to 2560 sek. So I logged into my e-services to make sure it was real, because like I said AE was much higher. In December 2023 they sent a sms statement saying they will be paying me 17589 sek. Anyone with at least one point in logic skill can see there is a huge gap of 15029 sek, you can sort of explain some of it away, but the more you stare, the more of an offensive austerity measure it becomes.
AE broken down looked like;
13036 + 6549 (housing allowance) - 1996 (tax)
Remember how I talked about flexibility and percentages earlier? This is where that stuff matters.
The daily reimbursement is closer to a very low wage job, that can allow you some flexibility. It also comes with a beneficiary card for 25% discounts.
SP broken down;
3200 + (no housing allowance) - 640 (tax)
When the daily allowance is fixed, you get no wiggle room for errors, or extras.
I might have dyscalulia, but I can still use markers, tools and excel sheets to sort my own finances, so I did. I thought there must be some grave mistake. You know, the oblivious to the fact, believing it was a simple solution. DEAD WRONG.
Regardless, I checked my medication stock. I'm running low. Made a journey into town on my way to work between my doctors appointments for newer orthoses and my internship. I showed a clerk at the office my paperslip with the math and said "can you make this work?" I think this was on the 26th or the 27th. She called my case manager, saying I might not even be entitled to SP. My case manager at FK had changed, you know, like that story of Jekyll and Hyde. She became cold, callous.
I had entered a state of panic.
I had friends run my numbers too. And it was all the same, after rent I'd have around 397 sek left. If you ever seen the memes that say "I finally paid rent, now I have a place to starve and freeze in", this is exactly it. I used my adaptive excel sheet to calculate my finances, and cut off anything that isn't essential (not that I had any to begin with). I had so many suggestions as well, I could move theoretically (but rent is still due), I could give up/surrender/sell my dog (and suffer alone).
Regardless of how these numbers went I'd be -4023 every month. Half is just the cost of utilities, you know, heat, water, internet and so on. Half is groceries and medical expenses. I had with assistive tools set up a frugal lifestyle that allowed me some savings. But if you are constantly reliant on new assistive tools, your savings can vanish just like so (a set of shoes with custom soles are usually 3600 sek, my much needed orthoses are 900 sek).
I'm not writing this to e-beg, I'm writing this for you to see, to understand how financially crippling it is to be disabled and in need of tools you can't afford.
And we are still only in February.
So I asked my social workers to help me locate the contacts and numbers for each case manager to rectify this problem. Because I've never been late with rent and it's honestly one of the most stressful situations to be in.
So we called the case manager for SP, and asked, and sought clarification. Did I send in all my papers right? Will I be able to pay my rent? What about RE, because I need to afford my medications. Yes the papers came in. Rent next month, it will be a delay. RE is irrelevant and you won't be reimbursed for your days in training.
Meanwhile me and EFA have weekly meetings, AF decided I should only contact them every 6 weeks for a follow up. I started lifting the fact I will have issues to go to work, both because of my ticket expiring and my lack of access to affordable medication. My casemanager at AF said that any financial questions are to be forwarded to FK. (So I brought them there.) EFA was keen on still hounding them down for me.
It's not like I didn't try, I did. On the 26th(?) I applied for municipal welfare, after being heckled by FK; "if you can't afford anything, apply for welfare". I sat through 1 e-application, 1 phone meeting, 1 physical meeting and at least 2 complementary paperworks, either with a parent and/or social workers. Trying to note down what I needed to do. My welfare, "WF" manager, has been away from work since mid-February. Despite calling weekly to ask who is overseeing my case, so I can pay rent, I never got full answers.
I couldn't sleep, nor afford my meds. I had to chose between my sleep aid, or my daily tablets, so I chose my dailies.
On the 29th I physically broke down, unable to work. My hands stopped functioning. I dropped a mug due to a failing grip, and I recall vividly that day. I let the last of my spotify premium play podcasts run on autoplay sometime during the week, and P3 Dystopia aired an episode on suicides and what drives them.
The three factors mentioned
Economic crisis — I can't afford my living
Isolation — I can't travel freely
Feeling like a burden — Shamed for being less abled
There are a few more, but the short summary gave only 3.
The podcast was more about the statistics, and trends within the genders, than the actual act of it. It also went over preventative measures and buffering effects. Regardless, after hearing that, and glancing over my own situation. I turned to my contact at EFA and said "put me on suicide watch and don't let me go".
The Beginning of the End
It's now March, I've called my landlord and pleaded for help. Asked to postpone my billing, just tried to put out any fire possible while balancing trying to not stress my dog and keeping up with the good girl image. Just trying to survive. I got no good graces left, my landlord won't push anything past March. The welfare system bans you from receiving payments, so I am forced to wait for their evaluations. I feel like I'm standing before the executioner.
I recall the podcast, and the time process it takes to go from just an intrusive thought, to real actionable plans. I cracked a joke at my peers, to synchronize their death watches, nobody would suspect a harmless TF2 meme as my way to say "I'm dying soon, it was nice to know you". A meme is a meme after all.
I think I set it to 2 weeks. That's when my expiry date as a passable good is over. I'm just another carcass thrown to the biowastage grinder, perhaps to end up as fuel somewhere, or just as pure filth.
I thought I wasn't good for anything. A failure. Just a waste of space. That I was better off dead.
I went as far as considering the comfort of my peers, to simply vanish. I won't say how, or with what, as that is how someone else might end up hurting themselves. I imagined remaining gone forever would be better than finding my remains. I also considered my dog, how he's my child, and that he deserved someone better than me.
If you have read this far, you can see how the pyramid of needs have eroded, and it didn't take that long either. You can also see given the sources, that I'm fitting all the criteria for becoming suicidal.
Did you try...x?
It's not like I didn't try. I really did.
At every instance where there was a snag, I referred to my health network. I talked to my occupational therapist about the hands and the internship, and was recommended to ask for help finding an office job because they were mortified regarding the laboring tasks. AF told me I have no redeeming qualifications for that. When I asked in forums for my disabilities what people worked with, I requested to be put on a training program that suit my abilities, again AF said no, I'm not entitled to it. I also asked a friend that works as a job coach what is going wrong, explaining my situation, only to be turned down when I asked AF for an evaluation of my competencies (on their suggestion as this would enable me to find internships faster and enter programs more tailored to me). This past week I learned AF also has something called SIUS consultants, which is a specifically appointed consultant with competencies tailored to disabled individuals. I asked EFA to find out if my AF contact was one, the answer no.
Ground 0
After exhausting all my ideas, all my possible solutions. I had none left, even with LSS at my back, the system won. Last Wednesday I had my final call with FK and AF with EFA.
I once more asked "realistically, how do you think I will manage work, without my assistive tools? Without medication?"
FK replied "seek welfare then"
I replied "I did in February, it's at least 3 weeks waiting time, I can't afford to maintain my health"
Radio silence.
AF chimes in "Em forget the money"
I again reiterated my needs, and asked about RE.
I questioned her on it asking why one is called rehab and the other is called sick in title.
FK then started citing some legal paper, without explaining the differences or why I was sent this paper to begin with. She just kept repeating that they are the same. And I'm wrong and won't get any more money.
They are not the same. They are two different economic programs for different activities and purposes. You can read about them here and here. My issue is I need to verify I do things correct, due to my disability.
After that call I decided, I didn't want to live anymore.
Disability Bingo
So how many conditions qualify for a humane insurance system?
It's individual, and regional. Randomly based on the case manager you get.
I won't state my full medical history because I'm not some zoo animal to watch, but I'll say this.
I have more than 3. The ones that impact my day the most are Ehler-Danlos (hypermobile), AD(H)D (I think it's type C nowadays), and Autism Spectrum Disorder.
When I'm medicated, I'm slightly more prominent on the spectrum, but it's manageable, ASD comes with perks too. EDS require a strict regimen of rest, and regular exercise. I used to lift weight machines to prevent my physical pain and subluxations. Despite the best of efforts, I'm still very limited. I rely on cars and buses, but I'm very much self reliant.
With the right supports I'm a star model for rehabilitation and upward mobility, but denied my basic needs, I'm like a fish out of water, forced to climb a tree.
Due to my severe counts of subluxations, I'm always careful with how I use my body. (I've dislocated my elbow by lifting a phone and opening a car door.)
You hopefully understand my predicament now, and the true scope of my limitations.
Part III — Where are you now?
Inside You There Are Two Beasts
That's how the meme goes.
Inside me,
there's the dark overwhelming monster that wants to kill myself,
and then there is the side that wants to live.
The side that wants lo live has won, for now.
Before I acted on my plans, and undo myself forever, I called 112.
I cried on the phone, told them how I felt. An ambulance came, and they took down my story.
I got placed in urgent psychiatric care with supervision and has mostly slept.
What I told you here is only really the short, and tailored version of actual events. There is so much more I wish I could talk about, but I need you to know.
I. Am. Safe.
My dog, Robin is safe. A friend that knows me has his full care sheet and is updating me.
The hospital knows about my situation, so does my network. Most of them.
I hate opening up to people about myself, to show myself at my most delicate, but maybe this post will stand as a beacon to someone in the dark.
I tried, and I tried real damn hard to get everyone to see and hear me. I shouted on top of my lungs, and only now has I arrived in a place where my weary voice is tuned into.
There was this quote from the Netflix series Midnight Club, it goes something like;
"Here but not here. Gone but not forgotten."
I'm still here, I hope you haven't forgotten me.
And I hope anyone out there, reading and identifying with this, will keep trying.
Someone will hear you.
Today it's the 27th as I write this. I've been hospitalized for about 5 days, and I've slept most of it. I feel like I still have to justify my own existence, even though I don't have to.
Call the hotline, tell your story.
The most disgusting part was that FK still tried to call me, to make sure I was actually sick. Had I not had EFA or LSS... I don't even wanna think about it.
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