Yesterday I took one of my cats to the vet. It was supposed to be both of them, but Fraidy Cat wised up to my machinations five minutes before departure time. He normally spends 23.5 hours of the day sleeping on top of the bed, but he roused himself at my approach and dived under the bed, which required him squashing himself flat as a bug to make it under the footboard, and parked himself dead center, unreachable. So I left with one cat and made a second appointment for another day. Hopefully he will be in more of a stupor on that day.
At the vet’s office, the person who scheduled me for the second visit asked solicitously what time of day and day of week I preferred. I told the person that I was flexible since I was not working, and that the first available appointment would be fine. The staff person laughed and said “don’t rub it in about all your free time!” Well, I couldn’t help myself. I said, “I’m sorry, I didn’t mean to be rude, but I’m not working because I have health issues.”
In response to this, the staff person’s previously friendly demeanor became visibly frosty and unpleasant. The rest of the conversation about scheduling, which had previously been conducted in a pleasant back-and-forth, was carried out in a clipped and detached manner. Whereas before the staff person had been looking at me, making eye contact, and speaking warmly, now the staff person looked down at the keyboard, spoke in very cold and detached tone of voice, and was very brusque. I don’t think it was a case of “oh I’m sorry” because the person did not, in fact, say “oh I’m sorry”. The person appeared to be actually quite annoyed and angry.
I don’t look disabled. I look perfectly healthy. If you saw me you would think there is nothing at all wrong with me. You would not imagine that multiple days each month I experience debilitating migraines. You would not think that the reason my cats are getting their annual exam and rabies shots in August instead of June, when they were due, is because I have had to reschedule their appointments several times due to migraines. My husband works full time, and even though the vet has weekend hours, we have chosen for me to take the cats to the vet, so that his few hours off from work can be spent in doing things other than chores. Lately, his time away from work has included increasing responsibility for his aging parents, so if I can wrangle the cats to the vet on a day when I’m not having a migraine, and we can get a weekend when neither of us has other chores, that’s what we want. It’s no guarantee that such a weekend will arrive with me headache-free anyway. But we try.
Why are people angry at you when you are disabled? I guess I sort of understand it in my case, because I look healthy. I don’t look like someone who has had a stroke; I don’t look like someone who has 5 or more debilitating migraines per month plus 6-8 severe headaches that border on migraine per month plus general daily headache that is more or less there all the time no matter what. You can’t see the fact that I have a visual deficit that makes it difficult for me to process information sometimes, or that can actually interact with certain kinds of visual displays to cause a migraine. All that people can see is that I look completely able-bodied and I’m not working and they are working their asses off and they wish they were me, lounging about at home enjoying the good life of “not having to work” and “just relaxing and taking it easy” and so on.
But you know? Even if that were true? Even if I were fully able and not having these fucking migraines all the time? I mean, what if I were not working because I had just recently lost my job? It’s not like tons of people haven’t recently lost jobs in this economy. Why would you make a remark about “rubbing it in about your free time”? I am sure that my disability issues do not leave me alone in wishing I did not have all this “free time” on my hands. There are a lot of people who would love to not be free to take their cat to the vet in the mid-afternoon. Sure, maybe you can argue that if you are unemployed you cut out the vet visits – but if one spouse is still employed, maybe you can still afford them.
I think people just expect disability to look a certain way. When I’m talking with people, and they find out I’ve had a stroke, and they say “you don’t LOOK like you’ve had a stroke” I hear that. I hear, “I have an image in my mind of the drooling limping stroke victim, and you don’t fit that”. I hear that people with disabilities need to look really disabled in the way that the currently-not-disabled are comfortable with understanding people with disabilities, in part so that we (and I include myself in this) who are currently mostly abled can go on dreaming that we will never LOOK LIKE those freak show disabled folk.
But the sad truth is that disability is more than what you can assess rapidly from a quick glance at a distance. And sooner or later, if we are lucky to live long enough, disability comes to all of us.
I have scoliosis and tension headaches that frequently cause me to be unable to get out of bed. I do physical therapy twice a week, can't carry/lift many things, and look like an overweight-but-otherwise-healthy 20-something. I am in graduate school, but frequently have to use the flexibility to stay home for a few days, and then work 12 hour days to catch up. My advisor is understanding, but it's hard to deal with peers and acquaintances. This is further complicated by the fact that I am resentful of being ill and want to live a "normal" life... and hate asking for help. I have had problems with university because of being sick, but unless you have cancer or get into a severe car accident it seems like even professors don't have any flexibility. It's not worth dropping out, but I can't always function at full productivity. There is very little in place for such a "gray area".
It's nice to know I'm not alone in dealing with these issues... sometimes I wish illness always turned us green so people could tell when you were sick...
Oh. you went off-script, hence the hostility.
"Yada yada, free time, lucky you"
"Yeah, ha har, free time me, awesome, lucky etc" did not happen and instead
"Actually..." thereby making the initiator of the script profoundly uncomfortable and not knowing what to say next. People sometimes react to this by being pissed off. I have no idea why. Perhaps they're just assholes.
I'm visibly disabled, in that I walk with a cane and if I'm wearing a skirt or dress you can see one leg is mangled all to hell. I still get people who get mad at me if on my way home from work I ask to sit in the designated accessible seats on the bus.
I think the answer is definitely assholes. Nothing else makes sense.
Just today, I blogged about how people apparently have no freaking ( sorry, I just can't get as vitriolic as CPP) clue how hurtful or misinformed the things they say can be. Most of the time, I can ignore it and silently curse them for their stupidity, but sometimes I just can't take it anymore. I'm pretty sure I wouldn't have been as nice as you were, as in "Really? All the free time I laze around in paralyzing pain? That's serious freedom." But then again passive aggression is more my style.
It's nice to be reminded that I'm not alone. I have a neurological condition that comes and goes. No doubt it's not as painful as your migraines (I get migraines without the aura all the time, but only once with pain). But no one who hasn't worked with me can accept the fact that on one day I might be able to move, turn cartwheels, assume crazy yoga forms, carry 50 pounds, and that a few hours later it might take me a good hour to walk from my bed to the bathroom. I live in dread that something will happen to my husband and I'll have to figure out how to navigate the system to apply for disability since my disability doesn't make me the most employable person in the world. The problem is that when it kicks in, there's no way I can get to a doctor. Even if I could make it from my house to my car and drive to the clinic, there's no way in a million years I could walk from the handicapped spot to the door of the clinic, much less drag myself to the elevator and get to the check in table. And no one's going to give an hour or two while I shuffle from the waiting room to the exam room. And assuming I'd gotten up at the crack of dawn, they'd be ready to lock up the clinic by the time I managed to shuffle back out the front door. I'm sick of getting yelled at by random strangers for parking in handicapped spots, which I do when I think I might have a flare up later in the day because otherwise the trip from the door to my car would be 3-4 hours instead of an hour.
The sad thing is that being cussed out for disability has become my norm. I was shocked (shocked!) yesterday when I had a conversation with my gym instructor and he asked me why I missed last week. I explained to him that I couldn't move and why, and he just took it in stride and didn't treat me any differently. When did someone treating me decently like a normal human being become abnormal?
I know what you're talking about. I spent about four years fighting fibromyalgia. Because of my inability to do anything that required any excessive effort, I gained a lot of weight along with it. More than once, I got the comment that there was nothing wrong with me, I was was just fat and lazy.
I was fortunate and found out that a lot of my health issues are dietary. I have to be extremely careful, but I have managed to keep things mostly under control for a long time. I have also learned which things will cause me pain and which things I can plow through...they may hurt in the short term, but ignoring it won't linger into tomorrow or next week.
Because of that, I now get to be part of the 'in' crowd and have to listen to people passing judgements about others without knowing the whole situation. I try to make the point, when people make comments like that, that there are a lot of medical problems that aren't visible, so we shouldn't be so quick to pass judgement. Even that comment is often met with a frosty response: I think some people don't like to have to think about the issue and would rather make quick judgements that fit their stereotypes/perceptions. They don't like to be challenged to made to look like a heartless jerk...even when they are.
I will say, however, that I'm glad I've had to go through this. My husband developed rheumatoid arthritis, and I think it's made me far more empathetic and understanding about what he's going through had I never been in a similar situation myself.
When I was not working because of debilitating migraine, my employer couldn't get it through its collective brains in HR that it WAS a disability. During a meeting with some HR dork (who couldn't understand why constant pain and noise and light sensitivity could cause workplace problems), said HR dork mentioned how she'd like to go on disability and have all kinds of "fun free time".
At which I pointed out that the "fun" side of things was blunted by excrutiating pain and projectile vomiting. Then I puked in the HR dork's trash can.
Yep. Count me in. I don't look it either, but I AM. And o the joy, the sweet, sweet joy of living off the luxurious stipend of 832.00 a fucking month.
Each month I fight the government for 10 hours of services,and many other essentials.
Often there is no human food food in the house, but the cats are fat and sassy. They are my true loves.
My human family understands nothing. Why am I not doing more to help out my recently widowed mother, who has 5 caretakers, and what is my fucking problem anyway? Family is just another word that starts with F.
My crazy psycho psychiatrist asked my therapist how I could be depressed when I was so smart. He understands less than nothing.
Maybe I am just a lazy asshole. As a recovering chef, I once had my hours cut DOWN to 80 a week from over 100, after tough negotiations with my criminal bosses (I'm talking to you fuckers that owned Sugar Reef in the 80's NYC, you know who you are!)
My personal record for headache was a 5 day nonstop headbanger. In the ER, morphine, several hefty shots worth, were not efficacious enough to make the trigeminal nerve stop the electric shock in my face, but it did bring down my blood pressure after 5 hours to prevent a heart attack.
Any second a bomb can go off in my head. Pain and I are on close intimate terms.
Thank you Zuska, thank you. We love you.
Dear Nobody,
You aren't. You are somebody. Please don't address yourself in that manner, as you remind me of me, and we both deserve better.
Fuck'em all.
Cheers.
It's internet etiquette to always use the same nick. I've been using this one since '93 and I'm not about to change. It's supposed to be funny. It was funnier in the days of text-only mmrpgs... Why does no one get it?
Hah. That's wonderful. I think it's an awesome 'nym.
I often wonder if the people who make such comments have actually thought about what it would be like to have "all that free time" for more than a week or two. Even leaving out disability, it can really suck not to have the option to be a useful/productive member of society in a way that other people can see, understand, and respect. While there are some conveniences to being unemployed long term, it's not a life I think most people would choose, barring having unlimited sums of money with which to entertain themselves.
And of course, once you add disability into the equation, fucking nobody would choose that life.
People suck.
Nobody, if you can, I'd start the process of applying for disability now. It is worth it to hire a lawyer who is experienced in navigating the SSDI system. Generally, they will do this work and receive a certain fee upon successful completion of your application and award of benefits that is part of the whole award. You want to get someone reputable who has had experience in doing this for some time. I had a really good lawyer who pushed my case right through after it had stagnated for a long time, because he knew what documents would be needed and how to present the case, and he knew the regional appeals system well. You do not have to be single and without other income to qualify for SSDI, you just have to be unable to work. There are many benefits, including that you could qualify for Medicare.
Also, consider asking a doctor to help you obtain a handicap parking placard. It sounds like you have a reasonable need for it. That way, if you need to park in a handicap parking spot, you could do so legally, and not risk an expensive ticket and fine. And also not risk getting yelled at by people like me - I get very frustrated when I find people parking in handicapped parking spots who don't have the placards or handicap license plates. So many times I am taking my mother someplace (she uses a wheelchair and/or transport chair) and the lone handicap parking spot will be occupied by someone who does not have plates or placard authorizing them to park there. I know people think "I'm just going to be in this spot five minutes" but that five minutes you are in that spot could be the five minutes that someone arrives there needing to bring someone into the building who uses a wheelchair. Get the placard! It's worth it in so many ways, and doesn't cost anything except filling out the form. If you cannot afford a visit to a doctor, there might be free or low cost medical clinics that might help you out with this.
I do have a handicapped parking placard. But I don't _look_ disabled, so people always yell at me, placard be damned.
Well fuck them. If you have the placard, you have the right to park there. Buttercup above is right. The answer is definitely assholes.
BTW, I just checked my records - the lawyer I worked with told me early on in our communications that I would not owe him a penny if we were not successful in our application for SSDI. We were successful and he received a standard fee that the government allows in these cases, plus some reimbursement for expenses, plus I paid out of my pocket for additional expenses (cost to obtain some medical records and some travel the government did not reimburse, I think the total was about $650.00). Any lawyer you work with should operate in this way, if you are applying for SSDI in the U.S.
I tend not to tell people things they don't need to know. Smooths my path through life, I think.
I, too, have a non-visible disability, so I know what it's like when people assume, and it used to royally piss me off. BUT, while the assumption that I'm not disabled 'cuz I don't look it is their screw up, assuming they intended to hurt me and slamming them with a verbal baseball bat or dropping a conversational atom bomb was my screw up.
I find that sympathizing with their pain and casually dropping in a little education in a "wouldn't it be great if neither of us had this stuff going on" kind of way works really well. The story they tell their friends later changes from "Well, F her. How was I supposed to know? B!" to "Everyone has stuff, and ya can't always see it."
You make an excellent point. I did say "well, I didn't mean to be rude, I'm not working because of health issues" and then tried to say something sympathetic about how it's no fun to be at work all day and it seemed like every word I said in trying to be empathic about how work was no fun just made this person angrier and angrier. I really was not angry or hostile toward the scheduler, if anything, I felt flustered because I feared I had come across as if I were bragging about a privilege ("I don't have to work!") while they were laboring away before me.
In a sense, I suppose, I do have a privilege, which is that I am fortunate that I am able to stay home with my health issues and still, together with my disability income and my spouse's salary, afford shelter and food and clothing - and vet care for the kitties. Many people who are living with chronic health conditions and other disabilities are not so fortunate.
It makes sense that the nicer you were about it, the angrier she'd be. She was probably ashamed and angry with herself for being an asshole, and deflected it at you as YOUR FAULT for MAKING HER FEEL LIKE THAT. And then to be nice and civil and move on in the discussion, well...then the script can't be 'the sick lady got in my face and was a bitch when I just made a joke. I was making a joke--can't she see that?' So she's projecting her shame/anger AND trying to goad you into acting like 'the bitch who chastised her rudely and unfairly.'
If she *didn't* get pissed off at you, she'd have to examine her own behavior and assumptions, and it's way easier to be pissed off at you.
That's why my general excuse is "I have a flexible schedule." I've got a complicated health condition, and I'm somewhere between unemployed and trying to get healthy. It's not a documented disability, but it affects me in much the same way. I hated the "You look better." As opposed to what? How I look every day? This isn't something you can see, what do you expect, purple with polka dots? I might be young and healthy looking, but I really need that chair. Now, if I can escape the "what if" monster in my head...(what if I get sick at the grocery store, what if this happens, what if I get sick when I'm out somewhere, what if I get sick walking the dog, what if, what if).
I'm in a kind of middle ground. I'm hard of hearing(severe hearing loss) and wear a pair of behind-the-ear hearing aids. I generally wear my hair long enough people often don't see the hearing-aids. I find even closest friends will forget and be impatient about dealing with my disability, particularly when I have to ask them to repeat a word of sentence 5-20 times(I hate doing this, and often try not to... which ends up leaving me out of the loop).
See, what I figured out is there is this certain... able-body discrimination that goes on. People who aren't pitiable(me and you Zuska) don't easily fall into any set group. We're not pitiable, and we're not able-bodied, and this confounds the way they look at the world. It also makes them pissed off because we're taking resources, and we can't be pitied from afar. If we're pitiable, then those resources are good(government stipends, disability placards, special treatment, etc), but if we're not, it confuses people.
Enough with my rambling. I totally understand Zuska, and its definitely something that needs to change. I hate inconveniencing people because they get so visibly annoyed and angry, and I feel awkward, but I also NEED to be able to keep up socially/class-wise/work-wise. I would almost call hearing loss a SOCIAL disability, not a physical one, which makes it even worse.
I have issues with processing sounds (my hearing tests as fairly good) and I find it's friends that are less likely to make allowances, possibly because I have to ask them so often to repeat things, whereas strangers or coworkers probably just assume I am a lot more impaired than I am and overcompensate. Or perhaps it's because I care less about what they are saying. My habit of just nodding and smiling when in a noisy environment just gets me into trouble too.
I have some problems with vision, and when people direct me to things (usually in stores) I often have problems understanding what they are pointing at. I find that if I say "I'm sorry, I have some visual impairment" they remain rude and unsympathetic but if I say "I'm sorry, I'm partially blind" they become instantly sympathetic and overly helpful to a fault. A friend has suggested that we have a large societal discourse around what it means to be blind and/or partially blind so they can immediately latch onto that. But the words "visual impairment" carry no real meaning, and may be off-putting (even though they more accurately describe my condition) as they sound too high-falutin' in our present times when expertise is distrusted and having too much education makes you one of "them elites". I think this is in part a class issue.
The more I think and talk about this stuff, the more I am finding that there is a lot of intersection of class with disability issues - just as there is with gender and race.
Yep, theres intersectionality everywhere.
Friends get used to the times when your disability doesn't get in the way, so when it does, its upset the normal routine. I've even had to talk to friends to bear with me when I need them to repeat stuff for me, and that I would appreciate not seeing them get upset or angry; I'm already embarassed enough having to ask in the first place, and seeing them get annoyed/angry makes me less likely to ask, meaning I'm then missing out.
When I phrase it that way, they become a lot more understanding, because they realize then the social implications of my disability. People understand not being able to follow or feel included in a discussion.
Would like to sympathise here - I've also got hearing issues but good hearing (I'm pretty sure it's some form of auditory processing disorder, probably with hyperacusis, but have never got tested for it because I figured there was no point) and oh, the nodding and smiling. I do it reflexively and it has got me into a lot of trouble! But I hate asking people to repeat things, and especially asking them to repeat them more than two or three times, and then there are certain environments where I know that there is no point because no matter how often they repeat it I will not be able to understand it.
I have a blue placard and have had no comment on it. At first I tried to look even more pitiful, but now I just limp along normally. Thinking about the situation; the guy scheduling is the provider and Zuska is the customer. Customer tells provider what is wanted, "Do you have something early afternoon on Thursday or Friday?" Provider responds, "Sorry, those times are all scheduled. I do have a 10:00 on Thursday." 'Oh, OK, that will be even better. Thanks very much." None of what my wife calls, "swapping life histories", which people tend to do in Texas, particularly in express check out lines.
It's all projection. Small people who envy anybody who appears to be in a better position than they are -- without much thinking -- and then resent it when reality strikes. It was probably 2 decades ago that I went home one day at 3 pm, and the receptionist snarked at me, "Must be nice!" I was too tired to snap back that I'd been working since 8 pm the previous day. (I was an engineer on a project that ran 24/7, and I had people working for me on all three shifts.)
2 decades later I remember the slight. Small people are just that -- small. (And I'm not talking stature here.)
People just don't get it. I'm with Jim, keep all personal information to yourself. I try not to pity or make people feel like they have it any better than me. Sometimes when I strike up a conversation with this gal who works at a shop I go to I feel tremendous privilege in that I have a regular-shift office job and here she is working evenings and on her feet all day. But other times I run into people who clearly have it better, maybe don't have to work because they can afford it not because they are disabled or can't find a job. I just try to work from a place where I'm not throwing around unnecessary pity, realize we all have our hills and our mountains to climb, and not get too hung up when I run into someone more privileged than me. With this woman you met I initially hoped she was just kidding. I mean she'd likely assume you lost your job due to the recession, so I'd think making a comment about free time would be one of sarcasm so neither of you dwell in a sad or angry place about the economy right now. But her cold attitude afterwards says otherwise. I'm really sorry you had to deal with that. And thanks for the post, I feel like there's so much for me to learn and think about here, a range of privilege I don't even realize most days.
The best I can think (about the vet woman) is that maybe she has unseeable health problems also, and wishes she wasn't working. But your story makes it seem otherwise.
I think what you experienced is the "privilege" of passing. So often being misidentified by people gives us the "privilege" of experiencing people's unfiltered opinions as mean and ignorant as they can be. Thanks for the thoughtful post, I thoroughly enjoy your blog.
The only thing I think is missing from this thread is that visibly disabled people experience the same thing in a different way though perhaps not as often and that invisibly disabled people do not suffer quite the same treatment that the visibly disabled do.
My son is quite visibly disabled. His problem is that people generally don't think he is able to do what he doesn't find difficult simply because it looks difficult to others. Hell, I'm his Momma and even after 30 years I find myself wanting to help him with tasks that he doesn't need help with, but look awkward.
On the other hand, he is sometimes my biggest critic because my disabilities (arthritis, fibromyalgia, dizziness & headaches due to a brain tumor) are invisible to him.
The fact is that my son's worst problem is also invisible: pain. And though I have intellectually understood this for years, it's only been recently that I've understood it fully and emotionally. That understanding began only when I began to feel pain that others couldn't really understand.
I have also learned that in general people are very unforgiving of what they do not consider "normal" no matter what area of life is involved. My daughter could not conceive without modern medical help and that seemed to bother almost no one, but when she also could not deliver "naturally" or breastfeed, the judgments and condemnations were free-flowing.
This idea of "normal" is very narrow and disabled people are just as susceptible to it as are supposedly "abled" people.
Of course "keeping all personal information to yourself" would smooth the way in many cases, but openly existing while disabled (and refusing to "pass") is a radical act and a form of activism. On days when I have the energy, I take it on; it's a small thing I can do that might make a difference.
It is barely possible that the person at the vet's office will think twice before making a similar comment to someone else. Also, the pressure to pass is pretty overwhelming and exhausting some days--in some cases it can actually be less stressful to refuse to suck it up and smile, I've found.
Everyone's mileage varies, even day-to-day.
My father is 90% disabled. He doesn't look disabled. I'm not disabled.
I find the art of the snappy comeback works well here - 'When you get too much time off, dear, you start to wish you had less of it', or 'At least you're earning money' or 'Free time to have migraines? Yeah. That's free time.'
Oh, interesting you mention "freak show disabled folk" as an example of visibly disabled people. I'm afraid it isn't necessarily so simple, though.
See, one my conditions is albinism and despite that people like me were freak show attractions people very often don't recognize albinism, and I get comments like "Oh really? I just thought you're extremely pale!" Ironically I'm freakish enough that people sometimes stare at me in horror, especially now that it's summer.
The thing is the people in circus side shows had to exaggerate and dramatize their performance with ludicrous acts and names (like Lobster Boy for example) to make them more sensational.
So yeah, even us freaks are too unspectacular for the preferred disability narrative that is always "Disability = Dramatic Monstrous Tragedy".
I don't really know what's behind that, I guess the disappointment of realizing "Oh crap, you're only human?" makes non-disabled people realize that disability is a part of being human and that frightens them, so we need to be stuck in that corner over there as the eternal OTHER.
I guess what I'm trying to say is that it's not so much about visible vs invisible, but more about only wanting to see what fits in the expected narrative.
/The Body Silent/, by Robert F Murphy, is a book you might find interesting. It's written by a social anthropologist who had a tumour in his spinal cord, about his experience of disability and, eventually, quadriplegia. It's autoethnography, simultaneously a memoir and an anthropological work, and I found it fascinating. It's been a while since I've read it, but I'm pretty sure it talks about the issue of visibility that you're talking about...
Thank you for that recommendation - just read a review online and it looks like a great read.
It's a sad state of affairs when society is so negative toward "invisible disabilities" that I'm kind of glad to not be the only one being slighted or looked down upon for having chronic headache trouble. Whenever they would ask 'if you had one wish, what would it be?' in school, I would always hands-down flat-out answer 'no more sickness'. I wouldn't wish this on my enemies, and I'm a pretty vengeful person. My boss, who also suffers migraines, but for whom a dose of 'insert popular anti-migraine medicine here' works like magic has been less than understanding these last 5 months while I try to navigate my way through this affliction. The head administrative personnel haven't been too receptive either, from clipped tones, no eye contact, incredulous tones (you couldn't come to work again?) to outright hostility. I feel your pain, sincerely.