#Ableismexists, so we BADD again.

One of the more insidious things about ableism is that - unlike a lot of other prejudices - there's still an absurd amount of debate over whether it even exists or not.  For example: my spellcheck? Still underlining it.  A more widespread example would be a recent Twitter hashtag, #ableismexists, which wound up with a not-insignificant number of retweeters who were arguing that it actually did not - while this was in no way a surprise (but rather an unfortunately common response, in my experience), there was one new-to-me experience: At least one of the most prominent deniers was a woman with a disability herself.

The woman in question made a YouTube video where she - while using ableist terms like 'retarded' and 'idiots' - not only insulted the originator of the hashtag's lived experience, but talked about how loving and feeling pride & claiming as part of his identity his disabled body was 'sick'. Obviously, I do not agree with her, but I also felt like her post (which got retweeted a LOT by non-disabled folks, trying to disprove that ableism was a thing in a  "See: a disabled person doesn't think it's real, so how are we supposed to take it seriously"way) raised a pretty interesting point - specifically, the idea that if you don't experience something, how can you then feel qualified enough to say that it doesn't exist?

This woman's story is her story - for her, ableism and internalized ableism were not just foreign concepts, but things she found actively oppressing: More than once she said (or intimated) that the closest thing to actual ableism was what 'social justice assholes' were creating by believing in ableism, that accepting disabilities and disabled bodies was an injustice - an ableist trope I myself have had to overcome (more than once, and in more than one way) - that 'accepting' our disabilities was as good as 'giving up', allowing us to 'feel sorry for the poor little cripple', accept a role as victim for the rest of our life.

If that's her experience of ableism, I can see why she'd fight so adamantly against acknowledging it.  My experiences accepting the fact that there are systemic, social, financial, legal, informal, educational, medical, (and a million other forms of) injustices against disabled people has helped me to step out of feeling like a victim, and into feeling like a member of a larger community - not just of people with disabilities who are fighting these injustices, but of any community I have ever been a part of.

I never felt more like someone who belonged on my college campus until a group of girls in my dorm helped me realize that some of the policies the school had in place were creating a completely unfair burden on me - a wheelchair user who, because she could sometimes walk a few steps, was forced to use the stairs during a fire drill and wound up incapacitated for months.  When it happened, I didn't feel as if I had any recourse, or as if it was the school's job to change its policy: It was only the insistence of the women in my dorm, who saw the result of the policy, who made me recognize that the policy itself could be unfair, that the school could be operating under its own prejudices of 'if you can a walk a few steps, you can take the stairs', and that that was an inequality that needed to be addressed.  I didn't feel more like a victim because someone explained to me that the rules were unjust; I felt LESS like one, because now I had something I could fight to change.  My ability to use the stairs was not going to change (no matter how much I may have wanted it to), so the policy needed to.

Figuring out that doctors aren't always without prejudice (particularly when it comes to treating chronic pain patients), has empowered me to step away from more than one doctor who was actively doing me harm. Witnessing that some so-called 'advocacy groups' work against the group they're supposedly advocating for has made me a more conscientious advocate myself, has taught me to listen to the people who are being spoken for, to give them the space to speak for themselves, wherever possible. Recognizing ableism in larger society, and in my life, has allowed me to (among many other things) set more realistic goals for myself, commiserate with and fight for other oppressed groups, speak up on my own/other disabled people's behalves, step out of the mentality that - although my disability isn't something I would have chosen - it isn't something I can live well with.

For me, accepting my disability has been a long and complicated process - I still sometimes struggle with the realization that a lot of things are not going to happen for me, because of my health, and that that's ok.  I still sometimes struggle not to push myself too hard, because it always ends up with dire health consequences when I do. I still sometimes have an issue with feeling like I'm not doing enough to be considered helpful, that I have to miss out on too many 'normal' days with my friends and family for me to be worth them sticking around for. That I still have value even if I am contributing nothing financially. All of those issues (and so many more) are things that I accept are internalized ableism - thought processes that have decided my value as a human being is lessened by my chronic illnesses and disabilities. Accepting that the way I feel sometimes has more to do with a screwed up value system (capitalist societal norms of value being connected to financial contribution, for example) is 100% more empowering to me than thinking that I am worthless because of something I cannot control.

I'm not discounting that woman's life or experiences - if she feels like ableism is a detriment to her personally, and to disabled people on a larger scale, that's her right, and it's her right to say so when the issue is addressed (which is why I'm not linking to her video: I'm not trying to start hate anywhere). But I think to ignore and dismiss and discount the people the tag - and those of you who participate in BADD every year, and millions of more disabled people - is equally unfair. 

Just because it is not your experience, doesn't mean it's not valid. 

To read about some more perspectives on (Dis)Ableism, head on over to the Goldfish's abode: BADD 2016.  

BADD 2015: Where I talk about Fanfiction and Comics, a lot, and you probably roll your eyes.

Welcome to all the Blogging Against Disablism Day readers & writers! I can't believe this is our 10th year! Thanks again to Mrs. Fishy and Mr. Fishy for all their hard work today.  You can go here to see all the great posts (or follow @BADDtweets on Tumblr).  
 
So, I thought a lot about what I wanted to write for today, and wasn’t coming up with anything, so I decided to troll my Tumblr blog for ideas, because there's a ton of good disability related stuff there - If you’re not on Tumblr, you’re missing out on a pretty vibrant spoonie/chronically ill/disabled blogger community, IMO, and my tags there are ultra organized, which is nice.  

And, then, this week, I saw this post  where MasterSkyRocker asks if there are any superheroes who “are representative of those with chronic pain?” and I thought about official canon (as far as I know it), and then I thought of fandom.

And I’ve decided to talk a little bit about my only non-family, non-health-related obsession this year - Fandom (in particular, the Marvel fandom, and -in extreme particulars-, the Avengers fandom & the Captain America fandom) and its diverse representations of disability.  

Because fandom is where portrayals of disabilities are at, people.

Last year, I wandered headfirst into fanfiction, and since then, I’ve been reading So Much Avengers FanFiction you honestly wouldn’t believe it. As in, I have 276 bookmarks, but those are only my favorite favorites, and I've easily read 4 times that amount of actual stories.  As in, I cut my yearly book quota of over 300 in half last year because most of what I was reading was on the screen in front of me, and almost all of it revolved around superheroes and their alternate realities.  

And - because I care about issues of representation and disability, and because I live with a number of disabilities, and because I can’t shut the critical thinking portion of my brain off when I’m reading anymore than I can when I’m watching television or out shopping (just ask my niece, who ranted with me about the lack of Black Widow merchandise in the Disney Store the other day), I’ve thought a TON about how disabilities are portrayed, or ignored, or tweaked to fit certain tropes within the contexts of the fics that I’m reading.  

And I’ve participated in more than one Tumblr discussion on the subject, and more than one comment thread on a particularly good fic.  Fandom has opened up a whole new internet arena to me - where we exchange opinions about which supersoldier’s PTSD would present violently and who’d feel more overwhelmingly depressed; about how Hawkeye’s being able to lipread/knowledge of ASL would benefit him in the field vs. the ‘handicap’ of being deaf and dependent on his hearing aids during a battle; about what exactly the Arc Reactor means for Tony Stark’s chronic pain level and his sobriety (or lack thereof);  and now there’s a ton of new meta and headcanon about Daredevil, because of his new Netflix series, that I haven’t watched yet and therefore can’t participate in yet, but I'm coming for it as soon as I can, because Yes, please.  

I have a lot of opinions, is what I'm saying. 

And… so much of it is awesome, and a lot of it is not,  - just like any fiction.  There’s good and bad stories, good and bad writing, good and bad characters and good and bad portrayals of disabled people.  

And yet - the part that strikes me as most important?  The part that keeps me coming back after a particularly bad trope shows up out of nowhere and makes me want to raze an author and their fic? Is that at least they’re being SHOWN.  At the very least, at it’s very worst, in the most trope-y, magical cure, Deus ex Machina crap piece of fanfiction? At least disabled people are THERE.  It isn't enough; It isn't where we stop; but it's something.

Because even when they’re supposed to be there -> Hawkeye’s being Deaf, being the most obvious Marvel Cinematic Universe example - Disabled people are just plain overlooked in the actual canon. 

Sure, Tony Stark definitely has PTSD and panic attacks in Iron Man 3 (As well he should, and I cannot applaud the filmmakers enough for including them!), but Steve Rogers seems to wander along without anybody mentioning that he might be depressed, in addition to being a superhuman, since he, you know, lost all of his friends, his loved ones, his entire time period, and then was unfrozen to unknowingly work for the agency he nearly died trying to destroy. Even if you believe that Captain America: The Winter Soldier is showing his obvious signs of depression (which, eh: yes and no: I’m of both minds on that), they never come out and say it.  Certainly nobody addresses it in any meaningful way.  

At least in the movie.  

In fics, I’ve seen Steve go to therapy - group and individual. I've seen him struggle to share that he's not perfect, and struggle to keep up his perfectionist image.  I’ve seen him rant and rave about all that he’s lost, and have his own panic attacks.  I’ve seen him ignore everything till he can’t get out of bed in the morning. I’ve seen him sleep around, and be unable to watch anything but nature documentaries because the noises on other shows startle him. I’ve seen him be a right bastard until someone sticks out a helping hand, and I’ve seen him recognize on his own that he’s not in the right headspace and work to figure out how to get there.

In short, I’ve seen him as a real person.  With real issues.  That are addressed - within the context of that particular universe - realistically.  (Because, let’s be honest, not everyone has the resources of imaginary -fanon Captain America.)  

Even Bruce Banner - who admits, in the Avengers - to having suicidal tendencies, is basically just assumed to be able to shrug it off and get on with being the Hulk already, in canon.  In fandom, I’ve seen him cry and avoid making connections to other people; and make connections to other people but screw it up; and make meaningful connections to other people and figure out that he’s screwed up.  He’s not stuck being the guy who can’t die even if he wants to, which is all the movie had time for him to be - in fanfics, he winds up being so much more.

Same goes for Hawkeye and being Deaf.  Sometimes it’s a huge deal - where he’s being tortured and his captors use it to their advantage; and other times it’s played for a joke - because if a man survives solely on pizza and coffee, can you really expect him to remember to replace his hearing aid batteries all the time?; and other times it’s barely mentioned except for how all the rest of the Avengers learned ASL really quickly because they’re mostly geniuses or supersoldiers and non-assholes, and most of them want to be able to communicate with their new friend/teammate as much as possible.  

And the list of disabled characters in my particular fandom is still not as large as it should be, and also surely not representative of fandom as a whole, but it’s still amazing.  I’ve read recovering from brain trauma Fitz (actual canon, the brain trauma; less so, the how he managed recovery part); Daniel Sousa on Agent Carter is a WWII vet and amputee, who canonically makes jokes about his disability, and in fandom I’ve seen him hold his own both against and with the Howling Commandoes; I’ve read more PTSD in fanfiction than I did in three years of psychology courses, and - since a lot of it comes from survivors themselves - I’m tempted to say, it’s probably more accurate.  

And it’s not JUST that they’re there and varied and (mostly awesome, because that’s why I’m reading about them in the first place), it’s that they’re REAL PEOPLE in fics.  They have sex.  They have bad days and great days and setbacks and breakthroughs.  They use adaptive technology to their benefit (and, all the better if they can rope Stark into making it for them). They feel sorry for themselves without abled people sitting around telling them to buck up. (Sorry: gratutious Bucky Barnes pun!) Or if the abled people in their lives do tell them to suck it up and get on with their lives, THEY GET TOLD TO STUFF IT.  They have families and worries and they're superheroes (or not, AU-of your choice), but they're people. Authentic representation for the win!

The fact that disabled people show up in fanfiction is amazing to me for a few reasons.  First, because I read so much anyways, and while I knew that large portions of people - not just disabled people, but also LGBTAQ people & people of color, for example - were not being represented in the mainstream stuff I was reading, at least not to any significant degree, I didn't know that I had other options.  But here? In fandom?  Can’t go a page of fics without finding an asexual Steve, or a Falcon who’s got his own storyline, or a Fury who never discusses losing his eye, but makes sure you know he’s seeing right through you just the same.  And now I want that in all of my fiction - I'm reading with a breadth and width that I never thought I'd be able to find, since it wasn't in my local bookstore.

And I'm not talking "specialty fiction" or anything like that: I want romances with disabled characters, I want adventures with them. I want sad stories and happy stories and erotic stories and parenting stories - I want to not have to go searching in a different corner of the store, is what I'm saying.  I want it all in one, all together, and now I know where to find it. 

And I think I’m particularly drawn to these stories since a lot of it also comes from writers with disabilities (or from other marginalized groups), who long to see themselves in the heroes they love, and figure out a way to make it happen.  I mean, is there anything better than being able to write someone out of a panic attack because you’ve had to fight your way through them yourself? Or to be able to -finally - explain to someone who doesn’t live with the overwhelming, all-encompassing aspects of chronic pain just how bad it truly can get via the hole where Tony Stark’s heart used to be? Or what touch aversion actually feels like, emotionally and physically? Or the idea that it's fine for me (and sometimes my friends) to make a joke about my disability, but if you're using it as the butt of your joke, well: Son, just don't. 

Are there downsides to fanfiction’s portrayal of people with disabilities?  Sure.  Definitely.  In the Marvel fandom alone, I can think of at least 6 different active arguments you can go discuss on A03 or Tumblr.  There’s a ton of talk about removing Bucky’s arm (and agency); about how calling people ‘trash’ (which, for some reason is sometimes seen as a positive in this fandom?) when they’re disabled is also pretty freaking ableist (or not, YMMV); about how having Deaf Hawkeye in the comics but not in the movies is sort of a sideways move towards representation, if anything.  That's not even starting on pre-serum Steve, and how he can be portrayed using every single bad disability trope you've ever read, or how de-seruming Captain America can so quickly wander into "oh no: please tell me you are not going there" territory. 

And there so many more examples, because authentic representation doesn't come easy, no matter who's writing it, or what audience they're writing it for.  Because sometimes abled people don't know the pitfalls to avoid when they're writing disabled characters, whether it's in mainstream fiction or fanfiction. And those misrepresentations can be harmful, absolutely.  

But there’s going to be disagreements and downsides to ANY portrayal of disabled people, and, as always, I think the answer lies in listening to the people themselves.  Like how blind people are asking that Netflix provide description services so that they can actually watch the show with the superhero who is most like them, and Netflix is listening to them.  Or when Deaf people applauded Matt Fraction’s Hawkeye comic for having pages and panels only in ASL. Or when a fic writer gets commentary from people with a specific disability that calls them out on somewhere they've screwed up and they don't get all huffy in return: These types of interactions can - and regularly do - happen in the fanfiction community. I know many authors who give constant credit to their beta readers - some of them have the disabilities that are being portrayed, and do their best to make it seem as accurate as possible.  And when they miss the mark, there are so many discussions about how, and how to fix it, and... I almost never see that in 'mainstream' fiction. It's heartening and hopeful. 

There’s nothing better, to my mind, than a fic that gets recommended by someone who knows. Who has lived it.  No higher rec than someone saying (as they often do) “Seriously: This author gets it right → that’s what dysphoria feels like to me!” and suddenly you’re understanding someone else’s life & experiences in a way you couldn’t have before.  

That’s the best of what reading good writing can do, and I find myself constantly wanting to say to people, “I know it’s Avenger’s Fan Fiction, and that’s not your style/fandom/regular cup of tea, but listen: change the names and read for the people.  Read and get it in a way you didn’t before.”  

Because maybe the Avengers aren’t your favorites (You’re wrong, but that’s ok, you can stay anyways), but if understanding people is, and you’re just being a snob because: ew, fanfiction? Then you’re missing out on some amazing writing, and some amazing portrayals of disabled people.  And, until they start showing up everywhere else like they should, I’m going to keep finding them where I can.  

(PS: If anybody’s interested, I can put together a list of recommendations, because: some of these should definitely be shared.)   

Hulking Out (BADD 2014)

So I knew BADD 2014 was coming up, and my brain has been... uncooperative.  In fact, it has been pretty uncooperative for anything besides reading Marvel fanfiction and carving out random hours of time to spend with my family for about a month now. :shrug: It happens. But a confluence of all three of these things happened over the weekend, and it seemed like too much of a good thing to pass up, so here we are.  Please be warned that this is completely ridiculous and that I KNOW I am stretching the metaphor a little bit too far - OK SO FAR - but... :shrug: It happens. (Also: some spoilers for The Avengers & maybe random comic book knowledge?)

----

During a sleepover with my niece and nephew this weekend, my (soon to be 8 year old) niece and I were playing with modeling clay while I was making dinner. Mostly, this consisted of her making a thing, showing it to me, and then setting it aside, or asking for help with a particularly difficult part of the construction (making a Bruins 'B' for her brother required a cookie cutter, as neither of us could make a B that would suffice, for example).  But, at a certain point, I'd gotten all the ingredients cooking and was just sort of waiting for things do be done, and so I sat at the table with her and started to make a figure of my own.

I chose the Hulk because a) I know how to make basic figures in clay, b) the green was closest to me, and c) LilGirl and I had been talking & reading about The Avengers just prior to dinner-time. We chatted a bit about Hulk and how he'd become the Hulk (origin stories - not always appropriate for children!), and how he's usually a 'normal' guy, except if he gets hurt or angry or there's dangerous situations going on. She remembered that her favorite part of The Avengers movie is when Hulk  smashes "the bad god-brother" and laughs "Puny god". She even demonstrated for me with the clay in her hand.  I told her how the old TV show of The Incredible Hulk used to make me so frightened I'd hide behind the couch every time poor Bruce Banner changed into the unbelievably large (to then 5 year old me) Lou Ferrigno, but that once he WAS the Hulk, he seemed ok; even nice, mostly... If you were nice to him. And how he always seemed so sad, at the end of the show, walking off down that highway, twinkly, piano-theme music playing behind him, which led us to talk about how hard it would be to make friends if you were the Hulk. I finished up my Hulk as best I could - his face was still not great, but at least his arms stopped falling off - and she finished her sculpture, which she then gave to me. She'd made her brother a Bruins 'B', herself a smiley faced self-portrait, and me, a copy of my wheelchair. I oohed and ahhed over it, and then the next steps of dinner took over, and I asked her to start clearing off the table while I got the rest of the food together and found her brother.

A couple of hours later, when we were finished eating, cleaning up, and playing games, she went to give her brother the B, and I was going to show off my new clay wheelchair, when I looked to where she'd put them aside, and found Hulk, standing in the chair. LilGirl explained to her brother that she'd made the chair, and I'd made Hulk, and when he asked, "Why's he in the wheelchair - he's a superhero...?" She made a face like he was being ridiculous and answered "So? Superheroes can have wheelchairs -" When he went to say something else she looked to me "Can't they Auntie?"

Before I could respond her brother butt in (the two of them are not great at letting each other finish sentences, but that's what siblings are for), rolling his eyes: "Of course SUPERHEROES can, but HULK doesn't use a wheelchair, because then he wouldn't be Hulk." Now they were both looking at me. Um... OK.

"Yeah, I mean, of course: Superheroes DO use wheelchairs" I rolled into my room and brought out my Oracle trading card, showing her the lovely and super-amazing Barbara Gordon in all her technological splendor. "We've talked about Oracle before, right, how she used to be -" "Batgirl" her brother put in. "Right." LilGirl took the card, gave it back - "Yup, I remember. But Batgirl is not an Avenger, right?"

I laughed and thought about explaining how Batgirl isn't even in the same universe as the Avengers (mostly), but... thought better of pushing my luck. "Right. But... Um Hawkeye - in some versions of the comics: He's deaf, so he has a disability and is an Avenger. And... " Nope: not going to explain PTSD to an almost 8-year-old, but... "And Iron-Man, in the movies he has a panic attack, and sometimes that can be a disability - anxiety disorders."

"And I guess it isn't exactly super-normal that you change into a big green monster when you're angry either" suggested her brother, ALMOST apologetically. "Well, I'm not sure disabled and normal are exact opposites there, bud" I corrected him gently (because you try and correct a 14 year-old any other way), "but yeah, I think maybe Hulking out could stretch into the disability category if we really tried, because it's something in his body that he's not always got control over and a lot of disabilities -" I gestured to myself "are kind of like that. Cousin Sara once called her seizures Hulking out." (Our cousin has epilepsy.)

"Plus, how you said that sometimes the Hulk - or the doctor who is the Hulk - gets so sad because people don't understand him? That's the same, right?" Lil Girl offered and I was kind of stunned. Because -although we talk about it a lot, how people don't always understand about me or how much it can hurt when you want to do things but you just physically can't - I wasn't sure she really ever got that part of it before. Shows what I get for underestimating her. "Um, yeah, kiddo - I guess that would be the same kind of thing, really. Sometimes being sick can be wicked lonely." Her super-sweet brother shoved his chair closer to mine and put his head on my shoulder.

"So see: Hulk could need the wheelchair." LilGirl gloated at her brother, never one to let an opportunity to best him pass. I rolled my eyes at him, because he's older and we share the experience of little sisters, if nothing else. And then I said "He could: but even if he didn't use the chair, he could have a disability. Lots of people do. You can't always tell." 

"Well, this Hulk needs a wheelchair." she said, showing it off. "He looks good in it too," I agreed, "although you probably could have told me that before I spent so long making his legs strong enough to hold him up, you  fruit loop."  She laughed, and we got ready to watch a movie and call it a night.

While I realize that not everyone will be on board with the whole Hulking out/disability metaphor (and I'm not sure I'm 100% behind it myself, as my brain cells would need MUCH better focusing skills then they are currently capable of), when I was thinking of BADD, and what the hell I was going to write about, it was this conversation that I just kept coming back to.  There's a lot I could say about it - I could talk about the power of representation, and having books and media that accurately portray characters with disabilities in a way that helps CHILDREN especially create a more realistic view of their actual world.  I could go on and on about how great it feels that some of what I'm actually hoping these children in particular are learning is actually getting through (Empathy! We can haz it!).  I could definitely ramble at length about how much I miss Oracle even though I love the current run of Batgirl. 

But really, I think, for me, this was about how often we underestimate what kids can understand, and how they understand it. To LilGirl, there was no reason that Hulk couldn't both be canonically Hulk and use a wheelchair: at eight, that limit doesn't exist for her. By 14, her brother, on the other hand, has more experience with the actual Hulk's story, and knows that (in canon) Hulk would never need a wheelchair. Which was also fine, because, to him, having no control over your body whenever you get angry seemed like a disability in and of itself. Sure, neither used exactly the terminology I would have preferred (normal =/= non-disabled, for example), but that's small potatoes compared to the big stuff. The big stuff here being that neither one of them thought it was even the tiniest bit absurd that Hulk - whatever his disability might have been - would be a superhero. There was just enough "Well why the hell not" in both of their attitudes to make me proud. (And not enough "But they're special BECAUSE OF their disability" to make me worry about running headfirst into super-crip territory.)

Because WHY THE HELL NOT??? is basically how kids work, and we should do a better job of living up to that, all around.

PS: Here is our Hulk, complete with his chair. My favorite is the push handles in the back of the chair, because I like to picture Captain American rushing into battle, pushing Hulk's chair while Hulk smashes with Cap's shield.

PPS: In case you haven't heard it, here is a link to The Lonely Man, which is the actual title to the theme song from The Incredible Hulk, which I didn't know until right now. The song still gives me the sads, though.

Venturing out (or, why I don't go places)

So last night, I did something I've been vowing to do a lot more of, but things - mostly being sick, or trying to accommodate other essential parts of my life - kept popping up and preventing me from doing: Leaving the house to do actual grown-up things.

Now, some of you may want to quibble over the definition of 'adult' when I tell you that the thing I attempted to attend last night was a book signing by one of my new favorite authors, Rainbow Rowell and David Levithan, whose work I have also really enjoyed - and who both happen to write YA fiction - as well as and two other authors whose work I had not had too much experience with before last night, but whose readings last night definitely made me curious enough to put them in my TBR heap.  (Paul Rudnick & Bill Konigsberg), but those quibblers would be wrong.  All books for all people, that's my motto.

Anyways, in order to go to the signing, I did what good chronic babes do - plan ahead, figure it out, try to make it work. I spent the day in bed, recuperating from a rather long Sunday of crafts with the family, and gathering my spoons for what I expected to be a couple hours of an outing (at night, in the cold, which aren't my regular things, so therefore take extra spoons.) Which, I was totally fine with doing - that's this American's life, anyways - chronic illness = chronic spoon hoarding.   I got up early to take a shower, so that I could have a nice long shower coma during the afternoon, and then spend some time getting ready to go out, and then hit the signing. And I rationed my meds & my meals appropriately, so that I'd hit the peak of pain management right around the time of the reading, be able to pop the next dose probably while waiting in line to be signed, etc. etc. - In short, all of the bits and pieces that go into everyday chronic living that people without chronic illnesses don't take into consideration, and usually I don't mention - They're just the cost of living in this body.

But the reason I remind you of that cost is just to show you you that that's where my evening started.  That's the blank slate of my night, if you will: A lot of effort went into getting there, and then it went down hill from there, but I just needed to remind you (and myself) that it took a lot to get there in the first place. 

 I'll also tell you what else is the cost of living in this body, and that is showing up at a book signing - that you have spent nearly a month anticipating, because people you like have been telling you how great this author is and how awesome her books are, and then you read the book and they are right, and she is awesome, and now you Must Meet Her -  a half hour early - to get a good seat, even though I've got my own chair, I like to make sure I'm not in an aisle or blocking people's way or sticking out like a sore thumb or anything - only to find out that the signing - which has been highly publicized by the bookstore through its tweets and tumbls - is down a flight of stairs. 

Now, ordinarily, I have reconned any new experiences quite thoroughly, so that this sort of disappointment is not a common thing anymore: A few years of showing up to places that you can't get into is both demoralizing and informative - you learn pretty quickly to call ahead and triple check.  But the thing about this bookstore is that I've been there before.  More than once.  And while I knew they had a downstairs, used books section, it did not occur to me that the signing would be there, because I had been to a previous signing - much smaller: I admit now that I should have recognized and realized this - that had been held upstairs.  So I was super excited that this little independent bookstore - one of my personal favorites - was having one of my new favorite authors to a signing, and the logistical part of my brain skipped right over the "well, where are they going to put the people for this signing if there are four authors?" part of the equation.

Still - a flight of stairs is an insurmountable obstacle for me, BUT, I was quickly assured by the booksellers that the event would be broadcast over the speakers to the upstairs, so I would be able to hear everything, and that my book would get signed, and that they would have the authors come up to meet me at the end.  So, after some mental realignment, I paid for my new copy of Eleanor and Park (I've only read Fangirl, which I love, love, loved,) and asked the clerk that I'd brought my own copy of will grayson, will grayson to be signed (and was assured that it would be fine), and I set about to listen to the readings and browse the bookstore.

Which - while not optimal, what with the phones ringing and the people upstairs not understanding that when an author is reading you should be quiet - mostly worked out OK.  A few twinges here and there when the crowd upstairs was too loud, or a question downstairs was too quiet, or the crowd downstairs laughed collectively and my gut gave a little pull at being - once again - on the outside.  Everybody down there was fangirling for Fangirl, watching as the authors read a scene aloud, and I was up here, trying to balance books on my lap and stop people from bumping into me while I parked my chair under the nearest speaker in what I hoped to be an unobtrusive corner.

But it got so much worse once the readings ended, and the signing began.  Because then the speakers shut off, and I was cut off from whatever was, collectively, happening downstairs.  Except for the random bursts of laughter, or the intermittent groups of people exiting, all chittery and excited. And I know that the reality of it is that a large group of mostly teenagers and college-aged kids were crammed into a basement room, hot and sweaty in their overcoats, even though it was freezing outside, just because there were so many of them and the line was so long. The reality of it was that the authors tried to talk with everyone and joke and smile and shake hands, and sign and personalize, all while trying to rush things forward, to get to the next person in the never ending line.  I know that that's the reality of it.

And I tried to convince myself - or my mother, as she got more and more put out on my behalf as the hours passed - that I was lucky to be up here browsing through the bookstore while waiting, instead of stuffed downstairs with everybody else.  But I didn't buy it, and neither did she.  Because that's part of it.  That hot cramped, impatient wait in line is part of the experience, and I wasn't getting it.

It's a hard thing, it's a terrible thing, to have something that you want so close, and be unable to get to it. I mean, all that was keeping me from being a part of things was those stairs, and the longer I waited, the more I tried to convince myself that this was all fine with me, that being excluded didn't hit every soft spot I had, didn't make me feel stupid and unnecessary and make me question why I even bothered to leave the house in the first place.

And see - that's the thing that I can't explain to the lovely clerk at the store who kept telling me the line was moving and things were progressing - that it wasn't the wait that was bothering me, it was being left out.  It's the part I wasn't able to explain to the book signing lady who rushed up the stairs, all apologies and explainations of my book getting mixed in with the preorders - that after four hours of waiting, and the store closing down around me, and listening to people joke and laughter rumble up from the basement, I had to go, I had to leave or burst into tears right there. 

The clerk called down when I was the last one left upstairs (Well, me and my pissed-off mum), asking about my book, and I knew just by the tone of her voice while she talked to the person downstairs - that slightly annoyed, slightly embarrassed, slightly trapped 'I don't know what the hell do do with this lady in the wheelchair who's just up here wandering around waiting' tone - that I wasn't near as OK as I was pretending to be: Here I was, in a bookstore nearly all by myself, which is basically like a wish-come-true-territory for me, but after hours of pretending I was alright with being left out, suddenly, my stomach started roiling, and I could feel the tears gathering, that tightness in your chest that warns you you're probably going to cry.

So when the event lady came bustling up the steps a few minutes later and asked for my name again - and then flew back down the stairs to get the book signed - I just, felt frozen.  Felt forgotten and frozen and knew I was going to cry.  In defense, I picked up the book nearest to me, turned my back on the clerk and my mother (who had been getting more and more agitated and whose agitation was wearing on me) and just stared blankly at its pages.  I have no idea what book it was.  I turned pages blindly for the five minutes it took the event person to come tearing back up the stairs, signed book in hand, apologies on her tongue.  I think I thanked her, I know I tried to thank the clerk: I basically "ran" as fast as my wheels would take me so that I would be outside before I started crying.

I mean, it sounds ridiculous to me right now, typing it out, to say that "I didn't get to meet the authors I went there to meet, and so I burst into tears."  That's not it, although that was super disappointing  - Because Rainbow seems so lovely! and her name is Rainbow! And David was hilarious! and the other authors were so charming and self-effacing I knew they would be my kind of people too.  It wasn't just that, is what I mean.  It was being forgotten.  It was forgetting to double check, and thinking I was safe in a place because I've been before.  It was waiting for four hours - patiently and without fuss - and realizing at the end that I should have made a fuss, that I'd made a fool out of myself by waiting. 

See, on here?  On the web? I am totally confident (well, mostly confident) in my ability to stand up for what's right, disability and accommodation wise.  In person, I almost always feel like I'm asking for too much, or that asking for anything is being pushy.  I've gotten a LOT better - you wouldn't believe the things college-age me let people get away with (I don't); but it's still SO hard for me, especially in the moment.  In the moment, I convince myself that whatever other people are offering is alright.  I convince myself that second best or third best or not worst is good enough for me, because it allows me to participate somehow.

Thinking it over this morning, I see all the things I could have or should have said or done -  I should have said something to the event person, right at the start, about arranging to come back at the end of the signing to meet with the authors.  I should have listened to the reading, gone to dinner, and told them I'd be back at the end.  I should have asked to meet the authors when I first got there - before the scheduled signing - once I learned that the event was inaccessible.  I should have done any or all of these things.  Instead, I let myself accept the solutions they offered, with the mindset that them offering any solution should be enough for me.

It isn't enough.  It shouldn't be enough. And that is why I left in tears, and that is why I was so upset last night (and am still upset today): Because it took so many spoons to get there in the first place, only to have my hopes dashed.  Because I rolled around a store I used to love for four hours, listening to authors I enjoy, and now my enjoyment of both of those things will be colored with the regrets of yet another time I didn't speak up for myself. Because my mother sat there fuming and asking if I wanted her to say anything, and it's embarrassing to have your mother realize you should be speaking up for yourself before you do. Because I never got my copy of will grayson signed. Because when they started shutting the lights off and making announcements over the loudspeaker about the store closing, I felt like nothing more than a scolded child.  Because I left in tears instead of raging at the very nice people who made some mistakes and missteps, but probably didn't deserve either.


 Because sometimes I just want to be able to go the fucking bookstore and see an author and not have to worry about spoons and stairs and being left out. 

---- Edited to add: Of course today I see on their website (which, since I generally follow them on Twitter/Tumblr -and again, I had been there before - I hadn't thought to double check and it says "Our downstairs event space is not handicapped accessible; if you need further assistance please call ahead of time for accommodation." So I can't even say that they weren't clear about it beforehand: it's just my own assumptions that started this snowball rolling down the hill. ----

I don't know if you guys are on Twitter

but I highly recommend checking out the #solidarityisfortheablebodied hashtag that's trending right now (Friday night, around 8 pm). 

It's enlightening, and I consider myself pretty disability savvy.  You never know everything, though; my issues as someone with chronic illnesses and various disabilities is different from even people with the same illnesses, and the spectrum of disabilities is wide and varied.  This is one of the reasons I love the Internet, because it shows you all the things you don't know you don't know. And it makes me feel SO MUCH LESS ALONE.

I don't know how many times I've said it here, or how many ways, but I don't think I could ever state it too much ~ I don't know what I would do if I didn't have a place to find 'my' people, to hear other people say the things my brain has been shouting at me, and to realize that it's not just my own ridiculous crap.  That doesn't just apply to chronic illness parts of me either - finding book nerd friends, and pop culture geeks and moms who don't care that I don't have kids (yet) and people who know they're writers but really would rather do anything besides actual put words on a paper (until they are doing it) - all the various parts of me that I have found echoed in other people online has made me feel so much more connected, so much more a part of things.

Anyways, if you're up for some learning, check out #solidarityisfortheablebodied - I guarantee there will be something there that makes you go 'hmm.'

“We are familiar with both ends of the spectrum: the short, acute infections and injuries of everyday life and the terminal cases of cancer, heart disease, or stroke that have a finite end. Chronic illness is somewhere in the middle, confounding and unfamiliar.” *

Welcome to all of you Blogging Against Disabilism Day readers ~ I hope this first of May finds you ready to read about a ton of things you wish you didn’t have to read about, to learn more about the people that make up our particular segment of the online disability community, and to (hopefully) feel like there’s issues out there that we can all do a better job of acknowledging and addressing!  (At least, that’s been my experience on previous BADD adventures: your mileage may vary, and this year might bring something completely different - but I’m excited to see where it takes us!)

My own post this year is a little bit different than some of the stuff I’ve addressed previously (you can see my BADD posts from 2012, 2011, 2010 (Oracle Post: commented on by none other than Oracle writer, Gail Simone! and is one of my favorite posts ever,) 2009, 2008, & 2007,), because I want to talk to you about a book I think might be right up your alley.

Friend of this blog (and this blogger), Laurie Edwards - author of the fabulous Life Disrupted:Getting Real About Chronic Illness in your 20s & 30s, and of the excellent posts at the blog Laurie Edwards, Writer (previously A Chronic Dose) has recently written a new - and extraordinary - book called In the Kingdom of the Sick, which is on sale now.  It’s an excellent book, that some of you might have already heard of (Laurie’s been doing a bit of a virtual book tour over the past month or so), but even so, I think it’s something worth discussing again here.

Let me first say, that it’s complicated for me to talk about this book, particularly in any sort of unbiased way, since I’m in it.  Quite a bit, actually:  Over the course of the last four years, Laurie’s been interviewing me, and asking me a bunch of thoughtful, challenging, questions - both specific and sweeping in scope - and then listening to me blabber on and on in response. She somehow managed to cobble a lot of my bits of nonsense together with the insights of other patients and bloggers and respected health care advocates, and combined them with years of dedicated research into the social, environmental, and cultural implications of chronic illness and come up with a sophisticated, well-rounded, and solid take on what it means to live with chronic illness in America. 

I’m going to talk about this book on two different levels - as someone whose personal story was told in its pages, and as just a reader, focusing on the compelling themes and discussions that Laurie manages to include in her chapters. 

On a personal level, I have to say how strange it was for me to see my story in print. To have my experience of illness not just represented truthfully and succinctly, but respectfully.  If you are a patient, like me, with often invisible/misunderstood chronic illnesses, you learn pretty fast that your word is not to be taken as gospel truth, that your story is to be heard with skepticism, that your experience of what it’s like to live in your body doesn’t translate to how people think it should be, and is therefore invalid.  But - as a chronically ill adult herself - Laurie has dealt with these attitudes on her own, and knows how important it is to make sure that she listened to and honored our experiences - I can only speak for my own interview process, but there was never a time when I felt as if what I was saying wasn’t being heard, and that really comes through in the final text. 

Which, for me, wound up being quite startling when I actually read the book: there’s my story.  All typed up and neat between the covers of an actual book - with my real name attached even!  (Which, considering I run an ‘anonymous-ish’ blog, gave me some pause about posting this here: but my concern is more that the people who know me in real life don’t find the blog me, not that the people who know blog me don’t find out who I am in real life, so I’m willing to take the risk.)  Even knowing my own experiences, they were hard to read: in some cases I was harsh on myself, or my family, and in others, the reality of my story is that it is often stark, as chronic illness often is - at least in this context.  So, it was sometimes hard to read about how doctors are dismissive of my pain, or how my family and friends (and teachers and doctors) so often discounted what I was feeling in favor of what they thought I should be feeling.  But the thing that Laurie manages to do so well here is incorporate all of the random pieces of my story and intertwine them with the stories of so many others, and place them in historical, social, medical contexts that make them so much more than just my stories: she makes them matter, in a way I hadn’t considered before.  The book is both my story and not my story  -  The author is honoring & using our anecdotes and non/mis-diagnoses and perspectives to discuss a more universal story, to show the patterns that surround the lived experiences of individuals & groups with chronic illnesses. 

This is one of the things that I found most fascinating about the book (and most relevant to my own experience of living with a chronic illness): that there are certain things that are universal to people living with chronic illnesses and disabilities - “We want science to give us clues when we’re surrounded by darkness, but we do not want to be reduced to impersonal statistics.” for example - but it’s still such an individual process. And that Laurie is able to blend and balance that so well is a credit to her skill as a writer.   

Laurie is able to see the big patterns - to identify and illustrate broad themes over long periods of time - but to make them feel real and relevant by using the true stories of actual, living patients.  By focusing on how the concepts of illness and patients have evolved over time, and using specific examples from those she’s interviewed, she manages to prove that illness doesn’t exist in a vacuum, but that the “stereotypes, assumptions, and challenges” that accompany our perceptions of illness as a whole, disability & chronic illness in particular are doing real harm (or, could be harnessed to give true benefit)  to real people in real time.  (A fact that will be well noted on your BADD journey today, I’m sure.) 

The example that most relates to my own life is that of the Tired Girls (a phrase coined by Paula Kamen in her excellent book All In My Head): those suffering with auto-immune diseases, invisible illnesses, migraines, pain syndromes & chronic fatigue.  Set against the backdrop of the 1980s, a time when (once again)  “the fit body became at once a status symbol and an emblem of an individual’s purchasing power, moral health, self control and discipline,” and our culture decided that being unfit was a moral failing, the stereotype of

 “The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better.  She is far removed from the cancer survivor triumphantly crossing the finish line in her local fund-raising event, surrounded by earnest supporters.  The Tired Girls have few cheerleaders, and, often lacking correct diagnoses or effective treatments, wouldn’t even know how to define what or where their finish line is.”

 Later on, she continues:

 “The issues apply to chronic illness in powerful ways.  For one there is obviously no finish line with chronic illness, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so.  Without that finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases, no backdrop of success with which outsiders can judge our journey.  Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are. … It is a murky gray space...”  

What does survivorship mean to someone who will never cross a finish line, who just has to make it through the next day? What does it mean to live in a society that embraces the power of fitness and an ideal of “you can do it if you try hard enough”  for groups of people who just can’t live up to that goal of perfection- and how does that effect not just the way they are treated by the culture they’re living in, but by the medical establishments that exist in that culture;  It’s an area that’s often overlooked, and I’m glad to find it here. 

Again and again, Edwards uses words like “unpalatable” “Antithetical” “disdain” “blame”  “untenable” “Overreacting”  “dismiss” - in her discussions of how society, the medical world, and sometimes even the patients themselves view people with illnesses such as  Chronic Fatigue Syndrome  & Fibromyalgia, and - as a sufferer for 18 years -  I can only agree that these are still the pervasive attitudes.  She talks about the importance of medical research (and funding - or lack of) as “critical to better acceptance and better treatment options”, as anybody with an underfunded, misunderstood disease can attest to. 

There are also compelling discussions into the intersections of gender and illness (which she also touches on in this recent New York Times article about Pain & Gender); environment and illness, class and illness; and how much of our experience of illness relies on the time and place in which we are living.  For example, most of us in America right now have the privilege of living in a ‘post-polio’ time, but less than 70 years ago, that would not be the case.  What attitudes and values from the post WWII era of "irresistible progress, a time when it seemed like science was on the brink of curing so much of what ailed us..." and yet "chronic conditions that were somehow beyond the reach of medical science - would appear that much more unpalatable" are we still carrying over and living with today - in our daily lives and in our medical establishments? How much of what we now understand about diseases like Multiple Sclerosis or Epilepsy would be shocking to someone from the early 1900s?  And what will we learn in the next 10-50-100 years that will change how we view the misunderstood illnesses of today? How do new technologies that will help us discover the inner workings of the brain, or processes of pain or genetic implications of illness, clash with the ever-present theory of self-improvement and moral judgements surrounding things like weight and lifestyle choices? Somehow, she manages to touch on all of these topics and many more.

The book is definitely, as the subtitle proclaims, a “Social History of illness in America”  - peppered through with patient interviews and perspectives are the broad trends and social constructs and how they inform our experience of illness - both as patients and as observers/outsiders. 

She looks at the Disability Rights movement in the larger context of the times - as emerging from the basic principles of the Civil Rights movement, and the Women’s Rights movement - and how it sometimes has come into conflict with both of those - If you’ve spent anytime on the Internet, then you know that not everyone’s feminism is intersectional, not to mention that if women’s right’s activists were arguing for equality, and certain illnesses were keeping women from being able to claim that equality, well, there would obviously be conflict.  Also true is that chronic illness, in terms of the disability movement as a whole, is not always welcomed and appreciated by the decision makers: and that the needs of people with chronic illnesses both intersect and diverge from the ‘mainstream’ disability rights movement (if there even is such a thing any more).  As Laurie puts it “Invisibility affords many opportunities for alienation.” 

She also provides one of the clearest perspectives about chronic pain I've ever read.   And doesn't shy from mentioning the judgements that often come attached to having something so debilitating that people - including doctors -can’t see or often measure reliably (and therefore don’t trust) -

“Chronic pain, especially severe chronic pain, is so encompassing and omnipresent it makes concentrating on anything else other than it nearly impossible.  Chronic pain can make it excruciating to engage in physical activities, keep up with a regular work schedule, or even leave the house.  Over time, chronic pain erodes so many aspects of the patient’s identity that it sometimes seems all that is left is the minute-by-minute experience of simply surviving the pain itself.  It makes the threads of everyday life blurry and out-of-reach, yet pain becomes the narrow, sharp lens through which everything else that matters is filtered.  This is the reality behind the statistics, the jobs left behind, the co-pays for painkillers that invite as many problems as the fleeting relief with which they tempt. .. It’s an untenable situation: patients are considered lazy or indulgent if they remain housebound, but should they manage some activity or productivity, then their pain can’t be as severe and exhausting as they claim.  Here again we see the contradiction so common in the social history of disease: the absence of outward physical manifestations of illness somehow negates the actual experience of having it.”

 and later

“Widespread pain conditions like fibromyalgia or CFS are especially social conditions, since their symptoms have a direct impact on a patient's ability to maintain various roles and identities.  Ties to the outside world via employment, family obligations, activities and hobbies, and social engagements are whittled away, and physical and psychosocial isolation increases.  Add to this process the fact that their symptoms and complaints are routinely viewed with skepticism from physicians, loved ones, or both, and the alienation of individual patients takes on more momentum.  In The Culture of Pain, David B. Morris writes that pain “cannot be reduced to a mere transaction of the nervous system.  the experience of pain is also shaped by such powerful cultural forces as gender, religion, and social class … Even when it just grinds on mercilessly, pain, like love, belongs among the basic human experiences that make us who we are.”” 

Right?  How much do I love that somebody gets all of that?

I’ve managed to include just a few of my favorite quotes out here, but trust me - there’s a million more in the book (see attached photo with number of sticky notes in my (!signed!) copy: and I promise that I did not sticky note myself).  I didn’t even get to mention the rise of consumerism, survivorship and personal responsibility, or the emergence of social media as not just a place for activism (shoutout to #BADD), but also a place for community building, patient research and all sorts of evolving questions about the role ‘participatory medicine’ will play in the lives of current & future patients.

 In the Kingdom of the Sick is comprehensive: it’s super compelling to anybody who’s interested in how disabilities and illnesses have been and are now perceived in our culture, and how that might change moving forward, and is incredibly relevant in a world where nearly everyone is impacted in some way by chronic illness (if you don’t have one, I guarantee you know someone who does).

 Highly, highly recommended, and hats off to the wonderful Laurie Edwards, who I’m so glad I get to call my friend.

---
I'll be back at some point with my favorite BADD quotes round-up: I hope you all are hitting as many sites as you can, and leaving as many comments as you can (Trust me, they really matter!)  Speaking of: please let me know in e-mail (bbckprpl@gmail.com) if you are having trouble with the comments on my site: Blogger does not always cooperate, and I've tried my best to shut down the captcha, but it doesn't always stay off.  Thanks for reading! 

*Laurie Edwards, In The Kingdom of the Sick, p10

Happy Arbitrary Day

Welcome to the Blog Carnival #83, for June 2012.

Our own Blog Carnival Leader Extraordinaire, Penney, starts us off with a post about the little known (at least to me) Infante Philip, the heir to the throne whose disabilities led to him being passed over as King of Spain & Naples.  (Particularly striking to me was the line from his Wikipedia page that he had been "excluded from the succession to the thrones of Spain and Naples due to his imbecility.", which led me down the wormhole of imbecility -> Mental Retardation -> Euphemism Treadmill -> a discussion re: the evolution of people first language regarding disability.) 

The Girl with the Cane gives her take on Disability & Religion, a topic that Ruth Madison also addresses some in her post We Are All Disabled.  Ruth's post also makes some great points about disability being seen as 'lesser', and the inherent hierarchies even within the disability community.

Casey's post Cartesian Dualism & Chronic Pain not only gave me a fancy label for how I sometimes have to manage my pain (Cartesian - relating to Descartes, and discussing the mind-body connection/problem), but had a great first person account of how transcending one's pain can be both a positive and a negative for those of us with chronic pain.  

In the political spectrum, I found this post by the Queen of Spain to be quite to the point (and hope that the Supreme Court sees the points this week as well).

 
Robert Rudney  is the author of a new book, Lovers Lame, which portrays the romance between two main characters with disabilities, and seems really interesting. (You know I'm always on the lookout for new books: Hero & Heroine both have disabilities and the story talks about the differences between their situations and doesn't just glom them together because they happen to both have physical limitations?  Immediate add to the TBR pile.)  I also found his discussion about the book in the comments for this carnival to be quite interesting: 

How many movies or TV shows present people with disabilities in romantic or sexual situations? Not many…

One reason for writing Lovers Lame was to explode this misconception. The loving relationship between Christy and Jonathan, two individuals in wheelchairs, transcends their disabilities, societal norms, a serious accident, and pig-headed parents. With a little help from a sympathetic personal assistant, they achieve sexual fulfillment. They are the lucky ones, but they are fictional.

Stacie's post, Masquerading, particularly hit home for me this month.  She talks about how she felt she's pretending, passing as normal, when she spent time with her younger child while her older child with disabilities was in school.  Because so much of her brain was still focused on the needs of that child, it often felt like 'pretense' or 'deception'.  One of the reasons posting has been so light here this month is because I've mostly moved in with my grandmother and uncle, having realized just how desperate my grandmother's health situation is.  I've got another (very long, complicated) post about this going up this week, but what I will say now is that whenever I'm away from the house - gone home to shower or to take my Tuesday with the kids - 85% or more of my brain is thinking about the situation here and what might be occurring in my absence, what I may have to put back together when I return.  So that feeling of deception - keeping the happy face going for the kids, especially - is one I'm becoming quite familiar with. 

Sharon makes some excellent points about the challenges of writing with disabilities (lots of them echo my own experiences, for sure):   

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

 Allison over at Gilbert & Me, (who was so patient when stupid Blogger kept marking her comment as spam),  has submitted an older post that is poetic and honest and beautiful, called What Does Seeing Feel Like In it, she discusses all the things she thinks she'd like to see, if given the opportunity.  She discusses so many aspects of sight and blindness that I, because vision is not an issue for me, had not considered before, and although it's kind of long, I urge you to read the whole thing if you can. I think the part I liked best about it is that she expresses a natural curiosity about how things might be different and does it in a way that shows all those tropes about how people with disabilities feel sorry for themselves are just a bunch of BS.  Case in point:

In the same way that my parents get carried away discussing how they would use their lottery winnings first to pay off all the bills, and then live out the rest of their days quietly in a modest house, in a community where no one knew them to avoid being scammed or robbed, I think about how I would react if suddenly, I could see.  ... But until then, I can accept staring longingly over a figurative fence in awe and wonder at the sighted world while sighted people stare back in amazement of me as the way my life was meant to be.

In a similar vein, there's this post by Wheelie Catholic, Do I Think About Walking, which I found in my Internet wanderings.

 And to bring this edition of the Disability Blog Carnival to a close, we have this positive perspective contributed by  Meriah, who's hosting her own Summer Disability Blog Hop each Wednesday, in her post  What the Cultural Value of Disability and Star Trek Have in Common:

We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.

 That's it for June's edition of the Disability Blog Carnival, this Arbitrary Day: Hope you all are as well as possible, and that you'll keep your eyes open for next month's Carnival, wherever it might be.

That's ok: I don't need to shower

So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower.  I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks."   That was news to both them and me, I assure you.  And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing.  But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc. 

We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary.  Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add.  But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK. 

30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.


At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me.  She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply.  Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013.  I've had two people come out since then, both for evaluations. 

Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are."  Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)!  Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make??  True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense! 

Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on.  So I try not to rock the boat."  She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours?  Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?

I don't think you even have had to pass math to guess, but the chances of that are also zero!

There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money.  There's a lot of talk about cutbacks to essential social services and financial supportive programs.  You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.

And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people.  Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program.  But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have.  That to ask for more is to put it all at risk, and that was enough.  And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything.  But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.

But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right.  I'm just being overly sensitive. 

   

Dear Entertainment Weekly,

Although my Entertainment Weekly did arrive today, not only was it unreadable to me, but it actually managed to set of a nifty asthma attack, due to the inclusion of perfume ads.  There have never before been odorous ads included in my copy of EW (and I've been a subscriber on & off  for about 12 years), so I am particularly disappointed with the fact that there was no notice or invitation to opt out regarding your magazine's intention to add ads with fragrances.  There are many health issues which could be negatively impacted by your decision, including my own, and to so completely ignore the needs of your readers with disabilities, seems a grave oversight.   It was not my intention to start the weekend with a heavy dose of steroids, just as my as I am sure it was not your intention to cause such a need, but when it comes to people's health, intention doesn't matter nearly as much as actions.  I suggest, in the future, that you enable the customers of your magazine to have the choice over whether these ads are included or not. 

I did contact your 'customer service representative' by phone, and was given the option to be removed from the perfume ad list when it comes to future issues, which is great.  However, it may take up to a month (meaning an additional 3-4 issues) before this takes effect.  So now I will potentially miss out on a month's worth of my paid subscription, during which time I can not buy the issue on news stands either, because they too would include the odorous ads, all due to a decision made my your magazine that an easy notification would have prevented.  This does not even take into account my current discomfort - an asthma attack only seems like no big deal to people who aren't having them.  I also realized, after I hung up the phone, that my complaint would likely go unheard by anyone else: the young man I spoke to changed the options of my subscription, and that was the end of that.  But it isn't for me: I didn't have the option of forgoing the breathing difficulties this morning, and I don't think you should have the option of ignoring the kind of damage your oversight can cause. 

I'd like you to consider instead that your magazine had been proactive towards its customers with disabilities (or even those who just don't like these ads): If you had included a little note about it in your magazine a few months ago, for some reasonable amount of time, given a little forewarning "Note To All Customers: If you are a subscriber of our magazine, please know that we will begin including perfume/cologne ads as of XY/XY/12.  If you would like to opt out of such ads, please contact us at www.ew.com prior to (start date), so that there will be no interruption to your service."  Simple: two sentences, and you've prevented a TON of possible adverse health issues; looked out for your consumers and helped them see that they are in fact, valuable to you; and maybe even gotten some great word of mouth press regarding your brand's willingness to be a truly accessible magazine. (I know that anytime a service I am using goes out of their way to make me feel valued, I tend to tell everyone I know about it.  The opposite, is also, unfortunately and obviously, true as well.)  

Instead it's (thankfully a relatively minor) illness & outrage on my part (although I should be used to being overlooked, despite the fact that I am a paying customer, I don't know that I ever will be),   and a truly missed opportunity to step up to the plate, accessibility wise, on yours.   

I look forward to hearing from you,

What Healthy People Say to Sick People

 'I wish I didn't have to work, either.'

 'You seemed good yesterday'

'Maybe if you got out more?'

'Man if I couldn't do that...'

'I'm so jealous!' 

:sigh:  Too true, unfortunately.

"When I get caught up in the web of feeling, tied up til I'm completely ensared in those slender threads of pain -

that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same. Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.
I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:

The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.

I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.


Sharon Wachsler spends some time calling out Esquire Magazine, and a few other organizations, in her post Disabled Writers Need Not Submit:

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."

Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."


Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.

Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here