Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.
I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.
You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.
Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.
People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.
I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.
I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”
You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”
Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.
I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.
The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”
Here’s the thing: I don’t have an obligation to tell you what my ability status is.
My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.
Because it is none of their business.
I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.
I also want you to consider that you don’t always know what disability will look like.
You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?
I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.
I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.
This is why it pisses me off so much that in the media (especially TV and the movies) people who fake disabilities hugely outnumber people who actually have disabilities. Because obviously the best way to skip out on work and live high on the hog is to be disabled. (We can’t make disability too attractive! Then people will WANT to be disabled! Ohnoes!)
It reminds me of this shirt.
A lot of people consider my sister to be that person. I choke so hard over my own rage that I can’t explain to people how many layers of pain that kind of thinking involves, about how she has to deal with being called a liar, being asked to prove how she deserves help when what she wants is to prove how much she can do on her own, and just living every day knowing that someone is thinking that and maybe getting ready to say it, right now, like a sudden slap to the face. And those are only a few layers! I know that she can think of a few thousand more, because she gets to experience them every single day. And that’s just the icing on her lovely CF/VW cake.
I have chronic back pain. It’s manageable, for the most part, but I tend not to tell people about it unless I have to, or it’s directly relevent (like, say, now). Here’s why I don’t tell people.
I used to curl (non-Canadians: it’s a sport. Go look it up.) competitively as a junior, and as you can imagine, my chronic back problems came up a few times. I got very little grief about it, and that’s not why I don’t tell people.
I don’t tell people, because several years after, I ran across one of the people I used to curl with. He told me, and I quote: “I injured my back, and now I’m in a lot of pain most of the time. I used to think you were just whiny and faking, but this really does hurt a lot!”
… Yeah. Yeah, it does.
James
Curling looks like loads of fun. I’m not to be trusted on level ground in good shoes, so I should stay off the ice. No curling for me. But I’d love to see it up close.
Of all the folks I know on disability, I know exactly one who was a scammer. He got caught. The (US) system is fairly decent at that.
If people knew anything at all about how frickin’ hard it can be to get on disability assistance, they’d never open their damn mouths.
And it’s not just the conservative anti-health reform people here in the US who rattle this crap off. It’s heard from the liberal camps, too, only it sounds different.
Stories like that are no different from the “I knew a woman who Really Really Did have babies to collect welfare.” People use them to confirm stereotypes that feed their prejudiced behavior. It is deeply, deeply classist. It is nearly always poor people subjected to this kind of scrutiny (and the scrutiny the actual system uses these stories to justify, dates back to the old Poor Laws that required such degrading and humiliating assessments that only the truly desperate would go through them, thereby saving the system money). Yes — the system designed this situation. Meanwhile rich people pull off scams that never get examined for the serious damage they do to society. While even if poor people were scamming some of the time it would not cost the system much at all. So we have to suffer the indignities of the assessments and the stereotypes that were specially designed to harm us and chase us away, while rich people get away with far worse without the stereotyping and degradation. There is no actual way to design a system that keeps out scammers. The best they could do is just quit degrading us. But then they would have to care about us, which they don’t. At any rate, these stereotypes are not accidental even if their spreading is. And they are disgustingly classist on many levels.
I know curling. I have even thrown rocks. But then, I have advantages most USians don’t; I went to high school in Canadia.
As a person with chronic mental illness, what I get a lot is friends and acquaintances who want to deconstruct my diagnoses under the guise of “encouragement.” So I get a lot of “oh, you’ve just been overwhelmed lately!” and “I’m sure you could get a job, you just have to give it a chance!” and also less gentle stuff like “look, *everyone* gets anxious about interviews; you’re not unique.” I do think they mean well, and their comments are on a continuum with common habits of encouraging people by helping them reframe things in a positive light; but there is definitely a large element of trying to defuse their own discomfort, especially when these comments are made in response to bare-bones medical information, not emotionally pouring my heart out. In order to fit me into their own unexamined value system, they have to minimize when I share objective, value-neutral medical information. Crazy people are terrible; I’m not terrible; therefore I’m not mentally ill. Which doesn’t exactly help me with my own struggle to really believe that mental illness is value-neutral and not a character defect. I know that my condition is real; if their respect for me depends on telling themselves it’s not real, where does that put the relationship?
But may I gently suggest to the OP – if the sarcastic humor is causing misunderstanding, do you think it would help to keep it to yourself outside safe spaces and trusted relationships? I hope you take this suggestion as not victim-blaming, but merely tactical. In my own struggle with stigma and misunderstanding, I can only imagine that if I added ambiguous humor to the mix, the situation would go from difficult to hopeless. I have enough trouble already getting people to accept my direct and literal statements as just that. I also don’t believe I owe anybody any explanations – living in the mental-illness stigma closet, I cope every day with how much to disclose and how much I can afford to care if the disclosure doesn’t go well – but if I was also habitually mixing in ironic statements (at a level of irony the listeners are unprepared for because they’re not familiar with the issues) I do think it would be too much to ask them to work it out. Perhaps my feeling about this reflects my experience as a person whose condition causes trouble with social cues and expectations; if you don’t want to explain something to me, fine. Your prerogative. But repay the respect by not asking me to mind-read, and especially don’t ask me to mind-read my way through a web of deliberately contradictory information; that is, literally, crazy-making.
One of my favourite aspects of curling is that the bar is rarely more than fifty feet from the ice.
It’s the little things that count.
Awesome post. Thank you.
CameoGold, I’ve been getting a lot of advice lately about cutting down the sarcasm in certain areas, like the classroom and internet. People who are subject to my bitter dark humour are either friends (who mostly think I’m joking about Don’s situation, as opposed to my own) or complete strangers who don’t really want to know the truth, but do really want to baby talk to my husband. (Which happens. Way more often than one would think. Unless one had a disability, of course.)
My humour is my way of coping with a world that thinks my husband is a burden I humbly accept because I’m such a good person. I don’t think I actually owe people like that the courtesy of my honesty.
Your mileage, of course, may vary, and I do my best to respect that not everyone reads or hears my brand of sarcasm. (I will not make bad cripple comments in the classroom, for example. Ever. Ever ever. Not even as a joke. That is not on.)
Lis, I think I could safely wait it out in the bar. 🙂
Anna,
I have a bleak sense of humor as well. Dh has finally adapted to it and will extend my morbid comment into something so implausibly depressing that we both end up laughing hysterically. Now, unless it was someone who knew me well, the person listening would wonder about me….
I’ve had people wonder aloud how I managed to get a permanent disablity placard for my car….as if it is something just for convenience that I don’t really need (I have invisible chronic illness). As if I somehow scammed the system. Ummm, dr’s don’t just hand out those signed forms to take to the DMV like candy on Halloween, people who have a permanent placard do actually have disabilities! Duh.
Ms. M
@ CameoGold: I get that “encouragement” a lot, too. It’s NOT encouragement. It’s denying the reality of my experiences.
By the way, I use a lot of bleak humor/sarcamsm, too, especially with my boyfriend.
I can remember trying to smile and nod and not burst into tears when the program I’d successfully applied for, got in and thought I was managing in computer programming, had the head call me in and tell me that I was good but unfortunately too slow for a consumer demand driven business. They were willing to write me references but they’d come to the conclusion that I had to go.
This after I thought I’d passed all the elimination phases.
This after I took myself there at eight every morning to have an hour extra to work and left at six every evening to have another extra hour to work.
This after I took work home and ate at the computer trying to maintain the pace.
This after my weekly cognitive behavioral therapy had been pushed to evry other week at 6pm and half the time.
This when I took five minute breaks in the bathroom to cry at the tension and feeling stupid because the instructors could only explain things one way.
This after I took to walking to work 2.5 miles and walking home 2.5 miles because the training program only provided a stipend and not any sort of salary so I did my best to save money in order to buy food.
This after I hid my disability because I did not want it to count against me.
And in the weeks after they let me go, people would ask me about ‘work’ and ‘training’ and when I said ‘they let me go’ they’d look at me and immediately go ‘So what are you doing now? When are you going back to work again?‘ as if I hadn’t been depleting myself in order to be ‘productive‘ as apparently nothing I did that wasn’t working for a salary or certificate counted.
These days I have problems dealing with my physical disabilities. In fact it’s only just occurred to me that they’re all connected and progressive in a logical way based on incidents in my past. And it’s embarrassingly painful to recognize that some of my need to see these connections comes from wanting to explain to people; I’m not faking needing the cane; I’m not faking not being able to cook some days; I’m not faking the pain; I’m not faking my unsteadiness. I do in fact have all these things wrong with me, they weren’t caught early and assisted, my body is having further complications, I AM NOT FAKING PHYSICAL DISABILITY BECAUSE I AM SO MUCH BETTER MENTALLY & I DO NOT WANT TO DO HONEST WORK.
PS: Speaking of humiliation? There’s nothing like painfully climbing onto a bus, using your cane and the handrail on a bad day, with tears in your eyes, putting your money into the kiosk, wishing the bus was one of the kneel down ones as it would have made getting onboard easier, and having the driver demand to see your disability card before giving you your ticket. Because of course in order to have a lower fare someone will FAKE pain, tears, stiffness and sore movement. And then while you try to balance to reach your wallet and hold on to something because people are moving around behind you, or the bus has started up – the driver get impatient that you’re taking ‘too long’ to show them your card and snap at you “Well do you have it?!” And when you finally show it, you don’t get an apology, you don’t even get the driver requesting someone stand up to give you a seat.
It’s not just anonymous faceless ‘Bad Cripples’ it’s ‘Anyone Who Doesn’t Look Like What I Think Disability Looks Like IS A Bad Cripple’ for a whole bunch of individuals.
A nurse told me that a 17-year-old couldn’t have that much pain.
The joking sounds natural – I told my mom I wished I had the flu Tuesday, then I could “get well” just by resting and taking it easy. (Can’t remember any other examples, but damn, do we have a bleak sense of humor – she has foot problems and I keep telling her to just lop them off. She never does. ::shakes head:: We keep it within the family and among friends as weird as we are.)
The “bad cripple” sounds like that one black guy EVERYBODY knows, who eats watermelon while being a deadbeat dad before doing some drugs. And since this one guy exists, well, forget other minorities. One guy was bad!
My husband and I have really dark, sometimes rude, senses of humor. We have to watch it in public, especially at our daughter’s school. We *may* be a bit immature.
Jokes about me, especially about my flexibility, are fair game at home. I sound like Holly Hunter, so Elastigirl is an obvious one. These jokes make my MIL uncomfortable, so we try not to do it around her, but sometimes we can’t help it. I also move one eye independently while the other is crossed, which freaks her out. Mean, I know.
LeeLee – *may* be?
That sounds awesome, I mean so mean. *stern voice*
If you ever do get into Bollywood, you may discover that it is a bit, well, tuned to the immature side, especially when you get into length discussion about Shahrukh Khan’s collarbones or Shahid Kapoor’s bangs.
http://ohmonkeytrumpets.blogspot.com/2009/03/bollywood-appeals-to-my-mature.html
Back On Topic – some of this reminds me of PIs watching people for insurance companies to prove that they’re faking it. Just because I can walk to the mailbox does not mean I can walk to class!
And that link to the rate my students site was FULL of bad cripples – one guy faked it, so they all did. I’d rather give everyone the benefit of the doubt. If they’re faking, that’s their problem.
Kaitlyn: I have had my invisible chronic illness since I was 10yo, so I have gotten a lot of “a person your age CAN’T be in THAT bad of shape!” Right. Like I’m “faking it” just to confuse them, annoy them, etc.
The reality is that people are freaked out by anyone who is in the prime of childhood or life who is disabled. Sarcasm here – “It’s ok for that middle aged couple down the street to be disabled by back trouble, but YOU can’t possible be disabled!”.
Avalon Willow: I used a disabled pass for the bus all through college, and I used to get the same treatment. Doubly annoying as I was still trying to hide my disability from my friends, but needed to take the bus. Hence the shouting of the driver was doubly humiliating.
-Ms. M
Way back, before I was a better person, I once said to Don in that irritated voice “You can’t possibly be that bad. The bag isn’t that heavy, just carry it.”
Cuz, you know, I was somehow an expert and knew anyone his age couldn’t possibly have that much pain, right?
Oh, I am ashamed of myself even now. We’ve talked about it since then. He’s forgiven me, but urgle. I still think about it sometimes.
I’m not sure if it really fits, but for me, words and phrases like ‘(just) shy’, ‘lazy’, ‘just need to try harder’ and ‘you’re not really trying/you don’t really want to try’ could go on the disablist language list.
And I could really do without the feeling like I need to prove something, how disabled I am, without the feeling like I need to speak up and assure people I really can’t do this-or-that or like I have to give them a list of symptoms and stress how severe they are. It’s rather disgusting, I *know* I don’t have anything to prove but people still make me feel like I do (I mean I´m disgusted that I can´t seem to shake off that response).
I really have to watch my bleak humor around certain people, particularly cracks about all the drugs I take. My sil has been kind enough to point out that since I’m on “so many!” narc pain relievers, how do I know how much pain I’m in? I should get off them all and see if it still hurts. Just to be sure. Yes, that’d be worth the withdrawal. Totally!
I’ve been accused by close friends, family, random people I barely know of not faking, but, you know, exaggerating my level of disability. You know, for all the wonderful perks it gets me. A quote from my usually great BVR counselor, when I told her I’m not interested in looking for work currently because I know I won’t be able to do it due to pain, fatigue and generally misery. Her reply, “I think working through the pain might take your mind off it. You could at least try, see if maybe not thinking about it all the time works out.”
Sigh.
At least most of my family is really supportive about everything. If only I could elminate the comments about how they know I really need it, but those fakers need to stop soaking up all the resources. Or that if they didn’t have to pay all those taxes to support lazy faker types, they could afford to support me without the government’s interference! Because eternal dependence on my family is my highest aspiration. Not to mention having no legal protections should they randomly decide they’re through with me.
Gossamer–I always used to try days without my drugs or cane, to “see if it still hurts”.
I have to say, that was always one of my stupider ideas/tendencies, and I do not recommend it to anybody else. Not to mention, “Not in pain because I am not in pain” does not feel like “Not in pain because the painkillers are working”, and neither feel like “In pain but drugged anyway.” It’s almost like I have the ability to make accurate and informed judgments about my body!
Er, that’s, neither feel like “not in pain and drugged anyway.”
Gossamer – I try not to think about the pain – reading something stupid somebody did online and getting all worked up about a negative comment about Dil Se is great for distraction.
HOWEVER.
People who say that have never been in pain so bad they couldn’t think. Or write. I mean, I could think, I’m always (over)thinking, but that’s the best description. I was in a class I enjoyed about a subject I adore (History) and the class wasn’t too hard. I was taking notes when “working through the pain” and translating the spoken words into notes became too hard and I had to run out of the room.
Ms. M – the nurse who said that was one of the nurses that sat at the desk in the center of the psych ward. She was the mean one. However, the nice one threatened me with the padded room, so… not a good experience.
It was at the beginning of the chronic pain condition (April 2006) and I was in because we were told it was the quickest way to see a shrink with our insurance.
The pain wasn’t that bad at the time, I got through four days of hell without pain medication okay, and I was only homebound because the fools at the school were breaking the rules but we didn’t have the resources to fight them.
I digress.
Thankfully, I haven’t personally run into people telling me about that one bad PWD… and my mom works with special ed! I consider myself quite lucky in that regard. Of course, I have run into that mindframe… “You’re laughing, you’re not in pain.” “You can ride a bus, you can go to school.”
Gossamer, Lis – I do this because of the fears of addiction and my body’s not fair, mean habit of adjusting to dosages quickly and demanding more to shut up.
I remember when I had a book due and I actually walked down the street to the library, I was in so much pain, but a late book! (It only cost 25 cents.)
And then there’s “it’s not so bad, I should save the pain pills for when it’s worse” days. And by the time it’s worse, the pain pills don’t work! Brilliant. And there’s rationing the pills because you’re afraid to call the doctor and ask for a refill because you don’t want to be an addict. Worrying about addiction is part of the “bad cripple” thought process.
Which is why I felt uncomfortable rereading the Carl Hiaasen book Skinny Dip a few weeks ago. In it, there’s a character named Tool who was shot in a sensitive place, but he never got it taken care of, so he steals Fentanyl patches from rest homes. It’s implied he’s addicted to it. Also, what bugged me was that he *got buzzed* off of them. I never felt anything mentally when I used them, even when they definitely worked.
Ah, one more “does it really hurt?” example – I’m on the couch right now, a bit overheated, a bit in pain, but not too bad.
Does it really hurt?
Let me go to the bathroom and see – AUGH!!!
Of course, this dogs me mentally sometimes. The pain is better, why am I not in school? The pain is better because I’m not in school, because I’m relaxing. So the pain is better, so I’m a bad cripple. Not that anyone else has said this, in fact they keep telling me that that thought process is bad for me.
I’ve been curling once, but didn’t find it that interesting – I couldn’t get the rock more than halfway across the ice and thought all the brushing seemed to be mainly decoration. Really, I wanted the instructor to leave me alone so I could go slide over the ice! 😀 (I have pretty terrible balance, so ice-skating, rollerskates, or anything like that are pretty much out, but I do love the feeling of sliding around.)
[/digression]
I’m not out about my AS in RL and everyone just ums and ahhs and changes the subject when I bring up the stutter, but! The Bad Cripple is so prevalent when it comes to AS online. In so many places, the first thing anyone will mention when Asperger’s is brought up is “those people who fake it so they can use it as an excuse to be rude!”
I bought into this for years until I realised that considering how incredibly widespread the problem of the Fake Aspies was supposed to be, it was really strange I’d never met any of them myself. Unfortunately, I’ve now spent so long defending myself for zomg DARING to suggest I have AS zomg that I don’t think I’ll ever get rid of the reflexive must-shield-myself-from-attack option anytime I bring it up.
To make clear what I mean, here is a sad story: before my diagnosis interview, I kept reminding myself that the clinician would *not* be out to get me, would *not* be scrutinising every tiny aspect of my story to spot where I deviated from the Perfect Aspie Norm and use that as an excuse to a) deny that I could possibly have AS and b) ridicule me – I’d expected this attitude speaking to my university’s disability service, and was trying to make sure I wouldn’t be bowled over simply by someone not trying to attack me this time. All the same, I still wound up absolutely shocked when I realised that the clinician wasn’t only asking questions to check whether I had AS (in retrospect, I think he may have figured that out just from the background information he had before the interview) but to find what my main problems were so that he could work out what kind of help I needed and how I could get it. I’d been so used to the idea that the best I could hope for was acceptance, the thought that someone would actually try to help me was mind-boggling.
This is the kind of thing the Bad Cripple does to people, and I want it to end. (Especially because a lot of the time what is denied to Aspies because they might be Fake Aspies!!! isn’t anything like money or services but basic human decency, which should not be a finite resource.)
Kaz – the problem of the Fake Aspies was supposed to be, it was really strange I’d never met any of them myself.
Does the “Bad Cripple” actually exist?
It’s always my cousin’s friend’s sister knows this guy who works for the city (not our city, some other city in another state) who totally busted a guy who was faking it!
And there’s the attitude that it’s easy to get disability payments! In Australia, I was refused disability payments (slightly more money and less onerous reporting requirements) in favour of unemployment benefits because I had cancer and thus would probably not be sick in two years’ time. I thought it was just my own failure to explain at the time, but there’s no shortage of reports of people refused income support for this reason, and carers refused carer payments because the person in question might get better. It’s not just one-off proof, it’s a constant battle to be not just disabled, but disabled enough and in the right ways, not to mention to be then well enough to comply with all the bureaucratic requirements! I would still have qualified for income support when I started part-time work, but I didn’t take it because I couldn’t work and comply with their reporting requirements as well.
Does the “Bad Cripple” actually exist?
I suspect not. I’ve taken to asking people who bring this up whether they’ve actually *met* anyone of the sort, and most of them pull something on the line of “my brother’s dog’s great-aunt-twice-removed’s GP’s seventh choice for Prime Minister…” I also think the number might be artificially inflated because some people consider anyone who’s self-diagnosed to automatically be a Fake Aspie.
Also, the burning question: if it’s over the internet, how do they know it’s fake?
This is something I’m really struggling with at the moment so forgive me if this goes into storytime. As part of my teaching course, the last part of my course required me to work full-time in an 11 week block. I started actively asking for accommodations for that block two years before I did it. Uni would not give reduced load, break it up into smaller blocks etc. My options were basically take it or leave the 4-year course I was so so close to finishing and try and get credit in a different course.
The (unpaid) block started ended of April so I stopped working beginning of April. I haven’t been back to work since. Due to illness, infections (schools are breeding grounds) and general overwork, the block stretched on into mid-August. I was lucky with the school and teacher I had, they reduced my load and generally got me through it but it was hell. It got to the point where I had to ring 6 people if I was too sick to go and most of them made me feel so guilty about it. In teaching, it is generally expected that you will come to work even when you are sick. There was a lot of illness around (swine flu anyone?) and there were times when 1/3 to half of students were away. I was very sick but it got to a point where I was going to school anyway because it was just easier than not going. I got through it and basically brokedown. I had my last assignment to hand in (based on my teaching block) but ended up with a 2.5 month extension on it because I just couldn’t handle it cognitively/emotionally/physically.
I am contracted to work casually up to 14hrs a week but because of cfs and the 4 hrs of return travel involved, even when I was working it was a lot less and would fluctuate wildly. My boss is relatively good and is very open to working from home etc but because of the cognitive nature of the work and increasing anxiety I haven’t been able to do any work even from home, have barely left the house for 3 months.
How does all this relate back to the post? I’m almost broke. I live in Australia and I found out recently that I probably could have qualified for Youth Allowance two years ago when I may have just squeezed into the 18 months 75% earnings independence test (I had thought I didn’t earn enough to be independent and that my parents earned too much to receive as dependent). I’ve also been thinking about applying for the Disability Support Pension (DSP) or Sickness Payment. I’m not sure if I can qualify for Youth Allowance but it’s probably more socially acceptable/easy. I can probably qualify for Sickness payment as long as I have work/study to go back to (but my contract ends in December and I’m not sure about my course next year). I feel I should be able to qualify for DSP because I’ve been sick for 4 years and haven’t been able to work more than 14 hours. But I just don’t know what the doctor will say, what the Job Capacity Assessor will say. Am I really unable to work more than 14 hours? It’s Chronic Fatigue Syndrome so how can you say you will still be sick in two years etc.
The thing is, in my immediate family and my area in general, going on social security payments is considered BAD. I live in a very conservative, very ableist area. People receiving payments are generally perceived as Dole Bludgers and Bad Cripples Ripping Off the System, Taking Tax Dollars from the Hard Working. Unless of course you are Good Deserving Cripple but then you’re supposed to be in a wheelchair or otherwise visibly disabled and not supposed to go out or have a life because your life must be Terrible.
I look at the application forms and I just cry because I need the money and I don’t have the extensive medical stuff for the doctor to attach to the form, I don’t know if my doctor will even agree to fill out the form and it doesn’t really matter cause I can’t even afford the $40 to go and see her (they stopped bulk billing) only to get rejected by her. I need to get the DSP so I can afford to go to the doctor again, so I can get the pension transport ticket so I can go out. But I don’t want the questions. From the doctor, from my parents when they see Centrelink calling/mailing, from other people. I’m struggling but I don’t want to be called lazy or a bludger. I want to go back to work but I really just can’t… I want to be Useful. Productive. But I’m Not Really Disabled. It’s All in My Head. If I just Tried Harder… :’-(
“I also think the number might be artificially inflated because some people consider anyone who’s self-diagnosed to automatically be a Fake Aspie.”
This strikes me as something that would be an issue with any sort of mental condition. Mental illness seems to be really misunderstood among the general population, not to mention the stigma attached. ADD? You need to concentrate harder. Depressed? Snap out of it. Yeesh.
Factitious disorders (people who do deliberately fake an illness, ie. Munchausen Syndrome) do exist, but their prevalence is tiny compared to people with actual impairment and disability. They just get a lot more airtime (like Kathleen and Jennifer Bush).
Oh, talk about ADD and ADHD bothers me so much – they’re overdiagnosing! They’re faking! It’s not a real illness, they just need a spanking, it wasn’t around in my day!
I have caught myself, frequently sighing and going ‘I’m so tired’ or ‘Too tired to do this’ – I’m not actually tired. I’m in pain. I just somehow got into the habit of claiming exhaustion rather than pain. Because people can be exhausted very often and it can be passed off as not enough sleep, need more exercise whatever. But people can’t be in pain as many times in a day as I.
And then I wonder why I think of myself sometimes as more lazy than disabled – until the next time I find myself verbally and mentally bluffing away a spasm or hand tremor or muscle pain with a controlling breath and the thought ‘I’m so tired’.
Had a conversation last night where I mentioned that for years when I was really stressed my shoulder would pop out of joint and that it used to happen at least once every three months and I was so happy when some of the meds I got on seemed to stop it. And the person I was talking to was very frankly ‘WTH? Shoulders popping out all the time isn’t normal!’ But since I don’t expect to be believed far less sympathized with, I don’t even realize when I’m minimizing physical issues.
Kaitlyn: My big arrgh about people going ADD is a cop-out for drugs, is that sure it wasn’t diagnosed back in your day, people just got called dumb and stupid and class clowns and quietly disappeared in the classroom and knew they’d take trade jobs. And on top of that, people’s bodies weren’t exposed to so many chemicals back in the day as they are now, with food additives and everything else. It’s still not clear how all that stuff affects fetuses and independent adults. AND there’s a whole lot more media crashing against the senses and expectations of keeping up.
I have a different take on this — sometimes I think *I AM* the bad cripple. Am I really disabled? Aren’t I just lazy? Sometimes I can get around just fine. Why don’t I just spend more time trying to find another job? Maybe the things people say about me are right.
I’ve been hearing “if you only worked harder” for at least 30 years, maybe more. Maybe I’ve just learned to be lazy. Maybe I don’t take responsibility for my actions. Maybe I really lose jobs because I’m incompetent. Maybe I just find it easier to complain than do things. Maybe it’s all just a giant nightmare.
I’m a bad crazy, becuase I don’t buck up and diet and exercise. When I was a child, I was just the brat whose parents didn’t spank her enough.
Now when mention I’m disabled, but don’t go into it, folks want to know my medical history.
.-= thetroubleis´s last blog ..I am mine. =-.
I’m another in the black humour boat. I think it’s a coping mechanism – you make a joke of things because it’s either laugh, or spend whole days in tears. Generally, if someone understands my sense of humour, I tend to hope they’ll understand other things too, such as the circumstances which prompt it.
Lilacsigil @ 30 – tell me about it! I have the fortune of having worked for Centrelink in the past, so I know how damn difficult it is to get Disability Support Pension, which is a big part of why I haven’t applied for it (I asked, got given just enough information to realise the burden of proof required is ridiculous, and gave up straight away). Honestly, though, there are idiots in this world (and a lot of them work in the Australian mainstream media, it appears) who seem to think it’s “easy” to fake your way onto a pension. There was an article in (I think) the Sydney Morning Herald a while back complaining about the fact that there’d been an increase in applications for DSP as a result of the global financial crisis. Note it was about more applications – I seriously doubt the number of people who were granted DSP increased by any huge amount. But of course this was a horrible horrible thing, just indicative of the way Dole Bludgers want Something For Nothing and how they’re all Out To Rort The System.
Honestly, if we Aussies want to do something serious about people rorting various systems, let’s start at the top, hmm? I mean, we’ve had regular reports of parliamentarians misusing their phone allowances, their travel allowances, their investigative powers etc – all of which probably add up to much more money than the amount even an extremely good actor could get out of Centrelink in a twelve month period by faking illness.
I have ADD and was diagnosed almost 30 years ago, back in the early days. They prescribed Ritalin, but at too high a dosage so I was basically stoned all through 7 & 8th grades and the first part of high school. Soon after, my dad died and my mom stopped counting pills so I secretly stopped taking them. Sometimes I think it would have been smarter just to figure out the right dosage because I still have a lot of problems concentrating, especially in meetings where I tend to want to fall asleep if I’m not moving. But of course you can’t jiggle your feet/legs/doodle while at a professional meeting. Even if you say I’m ADD, they will understand the jiggling as unprofessionalism, not a coping mechanism/need for stimulus. At the same time, I can function without the pills, so I do and try to find other ways to cope. Still, I get angry when I see the rich non-ADD kids at school who buy the Ritalin off the ADD kids, grind it into powder, fill empty pens with it and snort it during class. I laugh too, but I also get angry because there are people that really need it. I saw this behavior a lot, and I knew the other teachers saw it too, and were making false assumptions about them and about the kids who sold it to them. So here I do worry about the “one faker ruins it all” although this is a slightly different scenario. But I know that people don’t think critically and do generalize about groups of people.
I’ve been told too that I can handle the ADD if I just tried harder. I have been trying harder, for 30 years. On the other hand, I also have a mother who tells me I am hard worker and she admires me for that. So, go her!
I’ve wanted for so long to write on this, and still plan to, but:
I’ve been unable to work. At all. I’ve been able to work, but only five hours a week and when they scheduled me for six it really knocked me on my ass for awhile afterward. And I’ve progressed over the years to now being able to work full-time at an office doing a “real” job. But it is very very hard on me; I have to have an absolute minimum of ten hours of sleep, every single night, without fail, and I’m now taking a minimum of seventeen pills every day.
I hated being unable to work. It drove me up the wall; I was cooped up and unable to do anything to feed myself intellectually and in so, so much pain… I hated it. And yet here were these people telling me I was just faking it to get out of having to work, or telling me that they wish THEY could stay home all day (and I would say “give it three months and you’ll wish you hadn’t” or “not if you had to do it in this body you wouldn’t”), and that I have it lucky, and so on. And the people at work *now* who tease me during my off months about how nice it must be and how THEY don’t get to sleep in today and so on.
No. Just no, no, no no no no. I much prefer working. Stuffing envelopes and scanning barcodes makes me so fucking happy because I’ve been in that place where I’m not able to. And these people don’t fucking know what they’ve got. They don’t care. They don’t realize that THEY’RE the lucky ones. And that so many of us wish so desperately to be on the other side of that fence. They just have no concept of what it means to stay home from work, not for one day, or for one week, but for every day, week after week, month after month, year after year. They have no fucking clue.
And they don’t want to have a clue. We’re so much more useful, we nonworkers, when we are their objects in their own personal world, satisfying their need to tell themselves that they really deserve to be where they are and they’ll never have to face anything different because they would know how to get around it. Acknowledging our humanity, our separate personhood, acknowledging that we are real people with lives that are maybe different from theirs and that doesn’t have to threaten their worth as a human being — that’s hard, that’s tasking and involved, much too much work. Easier to leave us as objects.
And that, my friends, is what the Bad Cripple is about. It’s a reassurance to abled people that they will never wind up in that situation. We are but pawns in the chess games of their psyches. If they would take a moment to open that locked and barricaded door in their mind, and take a peek out at the person standing/sitting/lying in front of them — they might not be so worried about those Bad Cripples. But, you know, it’s so much more gratifying to them to keep us as objects, and so the Bad Cripple will continue to exist.
So there must be a neighbourhood somewhere, always just a couple of towns over, that your sister’s cousin’s friend knows that is entirely populated by Bad Cripples, Bad Non-white people, Bad Unemployed people. How else to explain their prevalence in conversation but the fact you never meet them?
Also, I’ve known various PWD, and a number of them have been personally unpleasant (being human beings and all, one would expect this). But I’ve never met anyone who has successfully gamed the system. The system hates everyone too much, I think.
No, “Bad Cripples” are not the problem. The problem is people who think that there are a lot of “Bad Cripples” around. If we could trust people not to lie about their medical conditions then there would be a lot more money for handing out to people who need it – huge amounts of money is spent in prying into people’s lives and testing and retesting them to “prove” that they have whatever-it-is that they are claiming they have in order to get the benefit they are claiming, if we could just trust people a lot of money would be saved leaving much more for doing actually useful things without having to get any more money from anywhere.
I think for some folks who perpetuate the “bad cripple” myth it is terribly frightening to believe that one can look “normal” or healthy and be truly disabled. It’s a fear that turns into a poison. My grandma, who certainly believed in the “bad cripple” although she was disabled herself, but not until she was elderly, so that was *totally* different*, was beside herself that I had a progressive, disabling condition. I heard a variety of things, like “but you look so healthy!” and “how can it be? You eat well/exercise/etc.” The hidden is scary, because we can’t control what we can’t see.
*imagine exasperated tone. The woman was a living contradiction.
I dearly miss working. I am hoping that with better medical management I can maybe do something part time in the future. What I really want is to get my master’s in Library Science. But that seems a bit farfetched some days. OK, a lot farfetched. While I might be able to work some, I am sure that will leave me utterly spent and short shrift my child when I’m home.
Amandaw – I’d really like to read a post from you about working. I’ve felt similar ways about it, although I’ve never had a job, have never been called for an interview anywhere that I have applied. This may have something to do with the fact that my disability is quite visible (wheelchair and obvious bracing), but surely not, because that’d be illegal, right? =)
When I was attending school and after when I was trying to find work and failing, then my support people were, well, supportive about it. They were sympathetic, encouraging, etc. whenever the situation called for it. Now? Well, now that I’ve said that my health just is not stable enough to do this, I’m a quitter. I’ve moved from super crip to bad cripple.
I really, truly would much rather be productive. I’d like to do something, just about anything, to contribute in a way I’d find meaningful. Heck, I’d like a little bit of money, please. I’d like something with which I could combat that little insidious voice that whispers what a burden I am, what a useless person, what a strain on everyone else’s resources and for what? So I can sit all day, drugged, nauseous and weak and accomplish…nothing.
Spending all day at home doing nothing is not relaxing. It’s exhausting and soul crushing. It’s spending your time desperately trying to find something to distract yourself. You take up hobbies that fulfill you, and maybe that’ll last, but perhaps you’ll lose that, too, eventually. Put that way, I can totally see why able-bodied people would be jealous.
Regarding TABs not being able to understand or imagine someone being in that much apin, I am reminded the revealing experiences I had when I was dealing with a ruptured disc.
I had never before felt that kind of pain. I was, and still am, TAB (except for the clinical depression, but that is not reallz bad a t the moment, so I would definitelz identify as TAB)I had never before been afraid to breathe because every cough and sneeze would cause me pain so bad that I almost blacked out.
When they gave me the first injection of pain meds, I had never been more greatfull for modern medicine.
Before that, I wouldnt have understood, no matter how hard I might have tried to empathise, what it is like to be forced into immobility because moving just hurts to much. I simply had no reference frame that would have included that kind of pain.
During the course of treatments, one doctor ended up putting a needle a little to close to my spine. The result was a fistula in the menengis (is that the right word?)which caused liquor loss syndrom. The main symptoms are nausea and a headache comparable to what you would suffer from if you had menengitis.
I had had headaches before. Quite a lot, actually. But nothing comparable to what I felt during those two weeks before it was treated. I had never been in too much pain to do anything put close my eyes and hope that it would go away.
These experiences didnt teach me what it is like to have a chronic pain condition, or what kind of pain other types of disability can bring with them. But I did learn how limited my own experiences were (and still are) and not to use them as a measurement for other people. Because I am not in their bodies. I can not know their pain. I only know that, when I was in that much pain, the last thing I needed would have been someone to tell me I was faking it. Or at least exaggerating.
Amandaw – I got that about being homebound in high school, “must be fun!”
I got bad cabin fever and suffered from mild depression.
I once hung up sheets in the study, creating little rooms. For no reason.
I do enjoy being home from school right now, but truth be told, I’d rather be able to go to class, because making things up is hard work.
antonia @41, one of my friends in college had people repeatedly try to buy her ADD medication off her. She found this really offensive – she needed that shit to get her work done, she wasn’t going to sell it to some rich preppy asshole so he could have his jollies. (Nothing against rich preppy folks, but that was definitely the demographic of our school.)
Gossamer @46, that so perfectly describes my mom’s experience of life right now. She has chronic migraines and while they used to be quite rare, now they occur much more often. And while she’s trying to get to the bottom of them… she’s basically unable to work. Unable to plan more than a day or two ahead, because she might be in bed and unable to move. It sucks, and she hates it, and I hate seeing her so unhappy.
I’m going to join the others and say I’d really like to read that post. Asperger’s has an 88% unemployment rate, and there are aspects of my experience of it that really, really make me worry about whether I’ll be able to hold a job, so it’s something of a pressing issue for me. And it’s a horrible prospect because I want to be able to work, because the idea of not being able to get a job is absolutely awful. We just get socialised to believe that holding a job = being a worthwhile human being, somehow. Also, the nature of my disability is kind of a catch-22 that way; everything gets so. Much. Worse. If I don’t have any external structure for my days.
Asperger’s has an 88% unemployment rate
I did not know that.
I’m doing more research, and the numbers seem to be between 75-95%, although it’s sometimes unclear whether that’s *unemployed* or *not full-time paid employed*. Not all the numbers are quite as bleak as that one, but it’s very high, even if you only count Asperger’s.
(This is where I first saw the 88% figure, but I’m having a hard time tracking down where that came from. )
Needless to say, I am not exactly filled with brimming optimism about my employability. I’m pretty sure my chances are relatively good as Aspies go if I can do something about the executive function stuff, but I’m painfully aware that unthinking certainty that you will be able to hold a job is very much a currently abled privilege.
Oh, I almost forgot, I’m a bad POC too, becuase I’m not uplifting the race. I make us look bad.
Re: Employment rate for Asperger’s autistics: While the numbers are certainly a cause for concern and definitely mean that we need better employment services for autistic people, I’m cautious about taking the numbers themselves at face value. There are so many adults undiagnosed–especially women. So the current statistics we have about adult autistic people are at least somewhat unreliable, and there’s probably some selection bias going on there. I know different professionals interpret “impairment” differently, and some refuse to diagnose AS for pretty ridiculous reasons. (You have a job, you have one friend, you’re married, you’re in graduate school, etc. As though any of that means you don’t have any difficulties.) There’s a lot of ignorance out there in the psychiatry industry, and a lot of adults who have no idea that this term may apply to them. Interpreting the current statistics with any degree of accuracy is a tough order.
I completely understand worries about being employable, though, being an Asperger’s autistic myself and having a partner who is as well. I’m still in school, fortunately for me, but my partner is struggling with this right now. It’s so frustrating, because I know that he could be great at a number of jobs (in his area of interest), but because of social skill issues and other disabilities, getting these kinds of jobs is incredibly difficult.
.-= Sarah´s last blog ..Debunking Neanderthal Nonsense Part II =-.
I don’t even have to think about finding a way that I could work if they don’t solve the home services situation first. I would need more assistance if I’m going to work too, but if you start working they give you less, not to mention that I receive nothing to begin with.
Getting the job isn’t even the biggest problem, I can actually get help with that, did it before. Keeping the job is going to be a bigger problem considering no one seems to be able to really help me map out exactly where I need assistance and what kind of job/situation would fit best, and if I could do that on my own I’d have done it by now. Even if they get that right I’m pretty much screwed and won’t be able to get out of the “No services at home means using up all my spoons for weeks in advance which means that after a certain amount of time (the best I did so far was long enough for a “high school” (dutch version) diploma) it all falls apart and I’m sitting at home again, and not just that, but need months just to recover from that whole burnout-like experience, and oh yeah, at this point it’ll be a miracle if my relationship is still going too” scenario that always plays out. Would be nice if it was only a matter of getting the right assistance with the actual working.
Lucky for me I’m one of those people who really don’t have a problem being at home all day (as opposed to regular work, not saying I don’t wish to be out doing more like going to a gym or visiting friends) and filling my own time. I’ve never had a problem finding stuff to do and I don’t get tired of my hobbies, and I can do the same thing over and over and really not get tired of it anyway (most people I tell don’t believe me when I detail just how much I can repeat something and not grow tired of it. I consider it a Really Good Thing, though it’s said to be a Symptom and people actually try to train you out of it). The best of it, of course, is that I’m finally about as relaxed and happy as I can probably get and can do what feels like SO MUCH around the house and for myself, especially since I can still remember the last time I attempted working so well.
@Kaz IME the biggest hurdle is interviews. The only jobs I’ve ever had were ones where I didn’t have to really do the whole interview thing. There are a lot of jobs I could do perfectly well and am well qualified for, where I would not have to do things I’m not good at, but in order to get the job in the first place, I would have to pass the interview, which of course prioritise things like eye contact and smiling that are difficult for me, and look down at hand-flapping or speech problems (I have a stutter and word order mixup that gets worse with stress or tiredness, and of course interviews are hugely stressful, so…).
And ugh, “fake aspies”. I don’t have an official diagnosis (no insurance, no money to pay for a doctor out of pocket), but am 100% certain that I am on the spectrum. I rarely say that I am, though, because there’s such a stigma to self-diagnosis.
Just…thanks.
My partner has Asperger’s and has only had jobs that didn’t really have an interview thing. They really do need to figure out some way to help Autistic people to get to work. Many of them have brilliant minds and (especially Asperger’s) are only really disadvantaged in social interaction skills.
Travis, one of my friends also theorises that he has Asperger’s, and he’s probably right, but in his case it’s very mild. The word order mixup thing that you speak of that increases with stress and tiredness is pretty typical of Asperger’s, but I’m no expert. If you’re worried about the self-diagnosis stigma, I suggest you get your doctor to do you a full analysis. My partner recently had his re-done… it’s just a series of fairly simple tests and nothing too daunting 🙂
Elaine, “They really do need to figure out some way to help Autistic people to get to work. Many of them have brilliant minds and (especially Asperger’s) are only really disadvantaged in social interaction skills.”
Statements like that bother me a lot, hard form words around the why, so I’ll see if I can once again gratefully make us of other people’s writing…
Something to do with, what if we don’t have ‘brilliant minds’? What if it’s not just social skills we have trouble with? The (what it comes across as, anyway) implication that having a brilliant mind and ‘only’ social skills problems is better than. That it looks like that it’s more because many of us have these brilliant minds that they really should help us get to work. And just something like the sentence structure having it framed like that, talking about ‘them’ etc. I dunno, maybe feels like being talked down to.
And to note that it might also play a role that people often try to divide us up into categories like the high functioning and the low functioning in order to shut both groups up or further one at the expense of the other. Like, the kind of phrase like the second one in the quote is often used to both argue that these kinds of autistic people are both more worth helping and makes it that people deny or don’t (want to) see a lot of difficulties they have. I really am wording this not at all like I want to and I don’t feel like I’m saying what I want to say, or only circle around it or touch it on one side or the other, if that makes sense.
I also took about 3/4 more words than intended just to get here :S. I really really hate when this happens.
I can’t find any of the more articulate stuff by other people because I really need to start mapping important blog posts etc. in my favourites more specifically…
And I have a pretty bad sense about when I can/should say something about when what someone else said bothers me, maybe like I’m totally out of bounds here or maybe I read it wrong and no one else would agree.
@Travis: I sympathise on various counts! I stutter (the speech disorder, that is), and I also get weird word mixups going on when under stress – I start talking without knowing what I’m saying and wind up getting things very confused. The thing is, I think I’m generally pretty good at passing; I don’t stim that obviously and can suppress it quite well, I’m pretty good at eye contact these days and have managed to learn a lot about socially inappropriate behaviour etc. This, and the fact that the field I want to go into (academic mathematics) is more lenient when it comes to Aspie-like behaviour than many, makes me think I probably have better chances at an interview than many people. But then there’s the terrible terrible disorganisation and the chronic lateness and the way people will just drop these “but didn’t you do X? You should have done X five months ago!” when I have never heard of X before things on me and the difficulty figuring out what’s important and what isn’t and and and…
When it comes to diagnosis, I will toss in that getting a diagnosis is not necessarily that easily done and something that does have possible downsides (e.g. stigma, possible forced disclosure, possible discrimination when it comes to health insurance if you’re in the US, that kind of thing) – I basically refused to consider it until I was sure I needed one, but I can totally understand wanting to get rid of the self-diagnosis stigma. I was self-diagnosed for five years, and I hadn’t realised how much of a weight it was until it was gone.
And then it took me nine months to get one. Which is why I have to kind of object to the “nothing too daunting”. D:
Norah, you are not out of bounds at all. If you ever feel uncomfortable like that with something someone is saying here, we want you to feel comfortable raising the issue. That phrasing made me a bit squirmy too; sometimes when we speak admiringly about certain characteristics, that can actually create a standard of perfection that the people in question, being human, can never meet — thus leaving them in the cold in yet another way. I’m always uncomfortable when people say “It’s just my body that’s broken/injured/etc. not my brain” — what happens when I’m not “brilliant”? or if I am, but the fog prevents me using that brilliance? or etc…
(Elaine, I do agree with the thrust of your comment — the way we set up the job seeking process is exclusive to people who don’t have the privilege of “social skills” such as they’re defined in popular society, and we need to really start thinking through how we might change it so as not to leave people out who may be damn fine at the job they’re seeking, but have to pass through irrelevant hoops (interviews, etc.) to get there.)
I hate myth of the Bad Cripple and the way people refuse to believe in the problems of others if their issues don’t express themselves identically to the way they expect(want) them too.
I actually once got into an argument with a friend because my vitamin deficiency doesn’t cause me to pass out like someone else she knows. My “friend” assured me that I was just being a gullible hypochondriac and don’t need the vitamin shots I get, that it was probably just me mismanaging one of my other health problems because she’s been on WebMD and knows somebody.
What she didn’t want to listen to was the fact that even if everything else is being managed perfectly and I’m taking normal vitamins as well as extra supplements everyday and I’m not getting those shots at least every month, I start losing my ability to speak properly, my memory is shot, I get so tired that I stumble like a drunk and every step somehow results in a sprained ankle.
I would actually love it if I could go without the shots because they cost me $40 a pop with insurance and I make minimum wage. And I hate being called crazy or a hypochondriac for acknowledging that I have problems, which I usually have to complain about for years before doctors go “huh, I think you have a problem.” I really like the site and reading about other people’s experiences because it makes me feel so much less isolated and alone.
Personally, dark humor is the only way I can cope, sometimes, so I hear that. If I only thought of my mental illness as Srs Bsns Doom and Gloom 24/7, it would be the exact opposite of helpful. But these things do tend to get misinterpreted by outsiders- or even people who should know better, sometimes.
These attitudes are just so baffling to me. Why is it so hard to accept that, if someone says they have a disability, they are telling the truth? Why would anyone lie about that? People seem so invested in a very specific idea of what a Disabled Person™ should be/look like that if anyone doesn’t match that image, they must be lying to cheat the system! Because that, inexplicably, is easier for them to accept than accepting the fact that their conception of what disability is is too narrow. Sigh.