i was going to post about the embroidery drama tonight, but then i realized that today was blogging against disablism day (BADD), and decided that posting the links i've been collecting would be a better idea.
i posted the other day and mentioned that i have fibromyalgia and chronic fatigue (as well as a few other things), and that's why sometimes i get behind on posting, i'm just not feeling coherent enough, or i've been feeling so crummy that i have very little to actually post about!
i thought i'd post a few links, to things that i found interesting, or that really resonated with me. i've been extremely lucky to have close friends and family who try to understand, for the most part, with a few notable exceptions, but i know it's hard for even them to understand. they see me on a regular basis (the family at least, friends, unfortunately not as often), and have a general idea of what's going on in my life, but there's more to it than being tired or weak or walking funny. there's the pain that i don't talk about, because frankly i get tired of talking about it sometimes, there's the "fog", the confusion and inability to think clearly and remember things, there's the emotional strain, the stress, the overwhelming sadness that i feel sometimes, the frustration with the ableist behaviours of the people and the world around me, the constant stress of dealing with my disability company and various doctors, the frustration at being unable to do things that i used to do, the seclusion, the wear and tear on my body that "faking" healthy for short periods causes, and so much more.
renee at womanist musings posted a post for BADD called fibromyalgia: the invisible pain that's very very good.
the spoon theory from butyoudontlooksick.com is a bit of a classic, but something that i wish everyone would read. (pdf)
The Open Letter To Those Without CFS/Fibro is good, with the exception of the last bit about getting better. quite frankly, there is no cure. the sooner we can move beyond the ableist idea that getting better and back to "regular" life is the holy grail, the sooner we can see the value in people regardless of dis/ability (and thus allow ourselves to live full lives with disabilities without shame or depression). there's nothing inherently WRONG about having a disability. there is no value to it, good or bad, it simply IS. the values that we subscribe to around dis/ability are values that society has placed on it and on the people people living in differently abled bodies. these values are about as accurate as the values society has placed on women's bodies, and haven't we figured out by now what a crock of shit that is?
the invisible illness bingo card is great. (with the exception of the author's response re: medical pot in the comments. it was a valid point, and that was just rude, frankly) goddamn i hate that shit, yet you get it all the time. some of the ones i've gotten -
"maybe it's the ink from your tattoos that's making you sick" right grandma, cause that's exactly why everyone with tattoos has fibro, but no one without tattoos ever gets it!
"it's not like you're REALLY disabled, so i don't think you have any right to say if you think something seems ableist. it's not like you use a cane or something." first, ALL people have a responsibility to dispute oppressive behaviours, so my ability or lack of ability has nothing whatsoever to do with your oppressive behaviours, but good try. second, lots of people with disabilities don't use mobility aids, for lots of different reasons, that doesn't mean that they don't really have disabilities! i rarely use one because if i'm bad enough to need it that day, i'm not leaving my freaking house, but that's actually none of your business.
"oh, you're so LUCKY! i'd love to sleep all day/stay home/not work/get a massage" this is by far the most common. trust me, you wouldn't really love it. i sleep all day because i'm freaking exhausted. not because i stayed up all night drinking and dancing, or even stayed up all night crafting, but because i tried to do something like go to the grocery store. sometimes i'm freaking exhausted for no reason at all! and if i could work, i WOULD work. i miss work! and massages freaking hurt. my twice weekly massages are loosen up my muscles so that they don't hurt more, they are not surface spa massages. they hurt. trust me.
"you're too young to be this sick, so you must be imagining it!" thank you mr specialist. it's so nice to know that you've gone to medical school for so many years and yet you learned so little.
"hey, you should buy this magic drink that i sell on the side! it'll totally cure you!" this one came from the president of my union local. yes, it really did. that was the extent of the support he gave me. hence why we went over his head to the provincial level. i unfortunately work in a fairly conservative area, and so he continues to be re-elected despite his sexist, racist, homophobic and ableist attitudes.
"if you stopped eating this/drinking this/smoking this, you'd be cured!" right. it's just that easy. thanks!
"it's just because you're fat" right. which totally explains why so many skinny and averaged size people ALSO have fibro and CFS!
"it's all in your head" actually, in some ways it kinda is, because they think it has to do with how our bodies react to and respond to pain (hence why anti-seizure drugs are commonly used to treat fibro). but i don't think that's what you meant.
and more. lots more. i get the "my coworker's sister-in-law's cousin's ex boyfriend's sister tried this and it cured her" one all the freaking time too.
this post, fibromyalgia: when your brain is not your friend is really good, and i actually sent it to my mom last week. there are a few things i disagree with (i don't know where people keep getting this idea that the pain is consistent for your entire life! where are all these fibro patients who say that? everyone i know is the opposite! and god, enough with the "suffering from" crap. people "living with", okay?), but it's a really good description of the less pain focused effects of fibro. the comments are highly annoying, just as a warning.
this post at the hand mirror is FABULOUS. i am so freaking tired of the word "lame" being used to equal bad, and so frustrated by otherwise politically aware people refusing to acknowledge that their insistence in using the word IS oppressive and inappropriate.
and there are SO MANY more blog posts posted today that are linked to the diary of a goldfish, and i haven't even begun to read the majority of them!
8 comments:
Hooray for you, for posting on BADD! I didn't have time to do so this year, but think it's an excellent thing to do.
Good links, and you make very good points about these invisible disabilities, especially about the stress of and frustration of it all.
Hey, thanks for the link! And yeah, my response to the pot advocate was pretty cagey (probably too much so).
thanks tricia! i really only did because i'd just read the womanist musings post, i wasn't even aware of it before that! i pretty much threw it together at the last minute, but it's good to get all of the links up there instead of sitting in my e-mail.
annaham, the bingo card is great! please let me know if you make another version!
There is no reliable cure for CFS/ME or fibro, but there are hundreds of effective treatments (and CFS/ME can sometimes be cured by antimicrobial drugs). It is NOT unreasonable to want to get better, because it is possible, and most people would do anything to get better. I used to have progressive CFS/ME and now I'm about 70% better. Even though I am a disability activist, my life would have been pretty much ruined if I was bedbound and unable to take care of myself.
it's not unreasonable, but there needs to come a point where we stop focusing all of our energies on "the cure" and trying different treatments, and start living our lives to the best of our abilities. congratulations on your success, but you are definitely in the minority of my experiences.
as a disability activist myself, i find your last comment to be fairly ableist. is there no value in life for people who are bedbound and require caretakers? of course there is! there's value in ALL life, but we are conditioned by society to believe that only certain ways of living have value.
Great post, Amy! I'm glad you found "The Open Letter To Those Without CFS/Fibro" useful. I agree with your comments about the section on getting well - I originally wrote it the Open Letter more than 10 years ago. If I were to update it now I would skip that line, or at least change it to reflect that improvement may not happen and indeed the disease may be progressive (as mine has been). I find myself reluctant to change it now though, as many people over 10 years have copied it and published it and used it and would be confused. Perhaps I could do "The Open Letter v2.0" instead?
Ironically, given the previous comments, I am now bedridden with my disabilities. It sure puts a kink in things, but I like to think I'm still a valuable member of society and I do things which have value even if that value is not monetary. Not that doing things is a requirement for the person being valuable (I believe every person has inherent value), but it helps my self esteem to be able to point to websites and say "I did this"!
Thank you for this post, as though I do not have fibro/CFS/M.E. I have many similar symptoms (like hypersomnia) so I get a lot of the same responses. Also going from the UK, where the M.E., a long named organism found in those who have CFS/M.E. makes the attitutes very different like if someone says they have M.E. and need dental work it will be scheduled in the hospital in case of complications - there is disability given easier along with assistive devices like wheelchairs for use in malls and stuff - the recognition that a person needs a better quality of life and how does that happen. To come back after a decade and find people acting like CFS and fibro is the 'slackers' disease, the 'hysterical womans' disease' was a slap in the face, I felt like I was back in the middle ages. When I had EMT's refuse to take me to the hospital or tell me to my face if I was so self absorbed, I wouldn't waste their time on real calls (because I had, to quote one, "probably fibro" - this from a EMT guy who didn't know what sickle cell anemia was). I found out that the disabilism CRAP affects and discriminates to make a society actively hostile to those with fibro and CFS but also with other disease which have as early symptoms similar presentations. I will never stop fighting to have fibro recognized by Rick Hansen's Wheels in Motion as what it is, a nerve disease (well muscles too but the pain is nerve based) - and that they deserve the same respect as an SCI, neither chose it, neither ticked it off as a career path but one is sent out to schools as 'ambassadors for disability' and the other is abandoned behind closed doors and curtains. Thank you again for writing this.
oh my I suffer with fibro too! you are inspiring mt to take my craft further after all ;)
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