“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

My Letter to the FDA

It's taken me a while to figure out what, exactly I wanted to say in my comment to you about Chronic Fatigue Syndrome & Myalgic Encephalomyelitis: in the 18 years I've been dealing with this illness, I've written many letters, blog posts, and rants; had a million discussions; banged my head against a thousand bureaucratic walls; spoken to my congressmen & my doctors, my family, other people's families, and a generally disbelieving public about this disease with it’s stupid name that changes your life forever.  I don't know if I've ever said the RIGHT words, if I've ever come up with the PERFECT explanation, but I do know this - I don't stop trying, because I don't have a choice. 

So that's what I'll say to you, government workers who are supposed to be helping all of us out here who are suffering from this heartbreaking, misnomer-ed & misunderstood disease: don't stop trying, because you shouldn't have the choice, either.  Chronic Fatigue Syndrome is a serious, debilitating, complex jumble of an illness - nobody understands that better than us patients.  It must be truly frustrating to the medical professionals who are tasked with developing the protocols, the drugs, the treatments, the diagnostic tools, the help we so desperately require, to be faced with an illness as complicated and difficult to nail down as CFS. I can only encourage you to think what it is like to live with such a disease, and hope that that spurs you to work harder, more diligently, more intensely. 

This is a disease that a lot of people still don't believe in: I don't have the luxury of not believing in it - I'd love to be able to dismiss my symptoms with a fairy tale-like ending simply by stating "but I don't believe in you..." But then I’d try to stand up and pass out again, so my fairy tale bubble would pop.  People don't believe in it because there's nothing to X-ray or blood test for (as of yet) and so doctors don't take it seriously.  Doctors don't have to take it seriously because our government doesn't take us seriously, doesn't devote the necessary time, energy, and resources into finding out what the hell is happening to us, how we stop it, treat it, improve it.  No, this is a disease where you get a diagnosis, and are quickly shown the door, left to figure things out on your own.

That's not the way it should be, and you're the people who can change that.  Please: take this seriously.  Please: know that there are patients out here DYING from this, living with this, suffering through their every day with this, and that We Need Your Help.  Please: do your job, and help us. Don't let this be yet another example of how you've left us to fend for ourselves.

Sincerely, etc.

------

I meant to post this earlier in the week, but spoons ran out, and so I didn't write it till today.  You still have till midnight on Monday, April 8th to comment to the FDA about CFS/ME.  There's a great post by Erica here at CFS Treatment Blog on how to do it, and why it's so important. 

"I Go To Seek a Great Perhaps"****

Well, here we are less than twelve hours into the New Year, and I've already made at least one wise decision:*  Early this morning, after watching the ball drop and wishing my mother a happy birthday, I snuggled down in bed with my first book of 2013, John Green's fabulous (and wrenching) Looking for Alaska .  I went into it knowing absolutely nothing: I thought Alaska was the state, if that gives you a clue as to how little I knew about the book (for those who don't know, Alaska is a girl's name).  But I had just spent three days in December watching John Green and his brother Hank (along with various other Internet-famous peoples) talk and read and work out and be awesome and chat live on YouTube with millions of Nerdfighters, all for charity. 

I don't know how I wandered across this year's Project for Awesome: I follow both Wil Wheaton and Miss Zoot, who are huge John Green fans, and I've been building up to reading The Fault is in Our Stars , because it's on every single "Must Read" list I've seen (and so many people I trust have loved it) - but it's also supposedly truly heartbreaking, which I can't really deal with yet, so it's been on the "I'll get around to it when I'm less weepy" pile for me. Anyways, somehow, I found out about Project for Awesome, and it was (awesome, that is).
  And in the midst of all the last minute Christmas shopping and bustle of wrapping up the entire known world of gifts, I carved out two days to sit and listen, and comment on various YouTube videos made in support of a million different charities.  The way P4A works is that each comment is worth a penny for a charity, and cumulatively, with over 700,000 comments they/we managed to raise $483,446 for the Foundation to Decrease World Suck.  I'm sorry, but if that isn't the BEST TAGLINE EVER, then I'm a unicorn.**

So after spending nearly three days listening to the Green brothers (and friends) speak and ramble and make up songs about their faces in the middle of the night, and try to auction off everything from googly eyes to unpublished, unfinished stories, and be as honest and heartfelt as just about anybody I've ever (not actually) met, I fell in love with them.  And it turns out, there's plenty to love: Their YouTube videos are amazing and informative, and have just enough snark to make me glad there are other people as sick as me out there.  Although there are SO MANY of them, and it is a little bit overwhelming right now, I'm glomming as fast as I can.

ANYways - back to the book.  It was, as expected, super awesome.  Quote-worthy, of course, but also moving and emotional in a way that I find much more often in Young Adult books than in what's supposedly "great literature" (make sure you read that in a snotty, British accent, okay?) I know there are people who look down on YA as a genre - these are the people who point at the dreck that is Twilight and pretend it represents the entire spectrum of what YA produces - but those people are obviously dopey non-readers, because the amazing stories, characters, themes and plots that exist in the YA section of your bookstore definitely hold up against any other, purportedly more 'grown-up' tales.

And Looking for Alaska is a good example of that.  Life and death is no less serious just because you haven't turned 18 yet.  Fear and love and hope and wanting - none of those things feels any less real or any less significant because you don't have a driver's license. I guess grown-ups forget that truth is truth no matter how old you are, and pain doesn't skip over you because you aren't ready for it.  I guess some grown ups forget that, anyways:  John Green certainly doesn't. 

I loved the book, is kind of the point, even though it was hard to read it, and even though I probably should've tried to sleep instead of reading it all in three hours in the middle of the night.  I loved it, and I'm going to read the rest of the box set I bought myself (even though it was two days before Christmas and I am seriously poor) as soon as I feel up to confronting a book about kids with cancer.*** 

If you've been here a while, you know that I don't like to do resolutions for the New Year, mostly because I can talk myself out of them just as easily as I can talk myself into them.  Instead, I like to pick a word, an overall theme that I hope to inject into my year.  One year it was Closer, another Breathing, yet another Worth.   All worthy, and not a single one worked out as I'd hoped.

Still, they each helped me to get through some tough times: keeping the word 'closer' in mind helped me get through some seriously shitty doctor's appointments; remembering to 'breathe' was the only thing that kept me sane this summer, when everything was crumbling around me and I was watching a woman I loved wither away; remembering that I am 'worth' something helped me confront some serious injustices in our family.  These mottoes have become important to me, have become keywords that help me cope with everything from getting out of bed in the morning to how to help someone you love say goodbye to everyone they love. 

But I was having such trouble coming up with a word for 2013 - I couldn't think of a good enough theme to propel me to where I want to be, to help me realize that where I am is both good enough and not enough.  I wanted something powerful, something ... all encompassing.  Of course, I came up with some 'almost right' words: try, accomplish, be willing.  But none of them were just right.  I've been playing Goldilocks with this year's keyword for almost a month now, trying to narrow it down. 

And then, this morning.  And John Green's obsession with last words (which, if you ask me is a wondrous obsession to have).  And The Great Perhaps. 

There's a labyrinth too, and that's a good word, but it's not my word.  Nope, my word for this year is just Perhaps.

Because sometimes I need a little push, and perhaps opens up the possibility.

Because perhaps makes me question things I already think I know the answer to.

Because perhaps is a positive maybe, and maybe is all I ever know.

Because perhaps is hopeful, and I want to be, too.

Because perhaps makes it seems like the choices are mine, even when they don't feel like they are.

Because perhaps holds your hand through the horrid stuff, and (while I personally could use a year free of all of that), it's comforting to know there's something to hold onto when it inevitably happens. 

Because perhaps comes from a new friend, and I'm hoping it will lead the way to more of them.




Because perhaps I can decrease some world suck of my own, thank you very much.

Happy 2013, everybody.  I hope your year is full of Perhaps as well.  


*I say "at least one" because I also did things like eating breakfast and taking my pills, which, in the long run, will prove to be wise decisions, I hope. 
**I am unfortunately not a unicorn. 
***Which isn't today, and IDK when it will be. Even though I know it's going to be really good, there's too many tender points that'll get poked, and I can't do that today. 
****Check Here for more info
 

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.

Hey, All, it's June

Which means that I'm going to be posting this month's edition of the Disability Blog Carnival - #83 - The post is going to go up on June the 25th, and (in honor of Arbitrary Day) can be about anything disability related your little heart desires: an old post that's a particular favorite of yours that you wish more people had seen, a brand, shiny new post that you're going to write specifically for the Carnival, a rant, a rave, a list  - whatever floats your particular boat.  

You can post the links on this page, or just leave a comment if you want me to send you my e-mail address (as that link has conveniently disappeared from my template for some strange reason).  I do ask that you do your best to make your website as accessible as possible... for me, that means making visual descriptions of things and leaving the captcha off of commenting, when I have the spoons. (And understanding that other people might not have the spoons, when I come across a site that doesn't follow that same protocol.)  Submissions will be open till the 23rd, just so I have a chance to compile them all, because last time I hosted there weren't too many, and I had to do some filling in with some favorite posts by other people, which meant remembering where the heck I'd read something, which is an iffy proposition sometimes for me.

Happy June, everybody!  

In which I tell you about a random website, and you waste time typing a hundred or more words

I'm sorry, what is this website about, again?  I get a kitten every time I get to a hundred words?  This sounds worthy of an investigation.  So I am typing right on through here, and am about a third of a way to a kitten already... what type of kitten is this anyways, Written? Kitten!?  I'm wondering if it's a real picture of a cat, or what? Or a little animated kitten like that stupid paperclip that used to pop up and ask if I needed any help from way back in MS Office, circa 1996? (Since I specifically remember that ridiculous thing showing up during a particularly taxing English paper Junior year.)  Question answered - it is a picture of a cat (or in my case, the back of a cat), from what I assume is some random site on the internets.  I am going to keep typing, however and get to the next hundred, just to double check that it results in a kitten picture every time.  Let's see... it just occurred to me that this would be a time where using the phrase "here kitty, kitty" would actually be appropriate, and, when you're typing, those occasions do not occur often,  (Just FYI - it was another picture of the same kitten, only this time I got to see its face.)  Also? you can adjust the word count that you want to reach (100, 200, 500, 1000), which might have come in handy back when I was typing up those ridiculous papers.  Although: Fair Warning, the site tells you copy and paste often, because it doesn't automatically save your work.  Which would be a major drawback for me, because I often forget to to save things until right after they crash, and I am left starting over again, but if you are smarter than me (Oooh: new kitten.  Also cute: It's got a little freckle on it's nose!), or more obsessed with kittens, then you might want to check it out.  The address is writtenkitten.net/#  Enjoy! 

Friday Night Lite

Don't especially feel like writing tonight. Don't especially feel like doing anything but sitting in the rocking chair and wishing it was somehow powered by something other than me, because rocking seems like it would take too much energy.

So here's some stuff that other people I feel like sharing this week, just because.

On the subject of families and traditions:

“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people.” — Thich Nhat Hanh

Lifenut talks about Snoopy Thanksgiving at her house, and the importance of building traditions.

"You can’t begin a tradition without making some promises to tomorrow. Tradition implies a respect for the past and a dream of the future bright and open. It’s recognizing something good and wanting that same goodness for people they won’t meet for years ~ their children."

In the same vein, there's this Chuck & Beans comic, from the Hallmark Shoebox blog -

And... that's all I have got for you tonight, because I am dragging. Just plum worn out, from trying to accomplish regular things, like normal people, and getting about 1/1400th of what I wanted to do accomplished. :shrug: Must stop trying to make words work well together, because none of them even really make sense to me anymore. Nighty Night!

American Censorship Day

If you've been on the Internet at all today, you might have seen something about American Censorship Day.  I first noticed it on Reddit,  and I didn't know what it was about, but as I spent more time wandering through the web, there were about fourteen petitions floating around, begging for signatures.  Honestly, it seemed pretty straightforward to me - the government and entertainment industry are looking for greater controls over the internet, the ability to shut down certain sites, should there be posts of copyrighted materials.  On the surface, I can see both sides to this - Copyrights are protected for a reason: the artists and business people who create films, music, art, etc, work hard and should reap the rewards of their crafts, to the largest extent possible.  On the other hand, letting the government, or a movie studio (for example) have the right to shut down, fine or punish an entire website for the postings of one user?  Seems like an extreme overreaction. 

I saw this video, and it made a lot of valid points I hadn't considered, regarding the economic ramifications of the bill(s):


PROTECT IP Act Breaks The Internet from Fight for the Future on Vimeo.


For myself, even though I respect that copyrights are important, my position (if I've understood what I've read and seen today correctly), is that this is a bill that should not pass.  This bill is way too strict (in terms of penalties), open-ended (in terms of who has the power, and what powers they would have), and doesn't really address all of the (or, honestly, any of the) concerns  I, as an internet user, have about systemic censorship.  So I signed a couple of petitions, and I'm going to see what I can do about calling my Congressmen tomorrow.  Because, even though I haven't heard of it before, this is something that's frightening to me: Giving corporations (even entertainment industry corporations) more power than they already have?  Not a fan.  Punishing all users as if they are monolithic entity?  Not a fan.  Limitless ability to ban websites with very little (or any, as far as I could see) oversight?  Not a fan. 

Censorship in America is so 18th century (if only); Let's keep it that way.

The text of the bill is here;  the Reddit thread I first heard about this from, and which shows that the websites of the bill's own co-sponsor would be in violation of the bill, should it pass, as well as a ton more information, including how to best contact your Congressperson, is here.  


Also, PS? The idea that the Washington Post says that Tea Party advocates are against these bills gave me more than a moment's pause.  I will freely admit that I do not want to be on the same side of just about anything as the Tea Party, since they are generally... the polar opposite of my every instinct.  So I took a little longer to research, after I read that, just in case I was missing something.  But no: They're worried about "business strangling power" that the government might have, if the bill is passed, so I guess, even though we have different reasonings behind it, there's a first time for everything.

I'm working on it...

Got a couple of more in-depth posts in the works, but in the meantime, I thought I'd report back on my no-roll pie crust experiment .  I threw it together with some frozen strawberries and blackberries, a little oatmeal/brown sugar crumble, and am eating it for dessert right now.  Grades are good - it's fairly sweet, but very flaky and hands down the easiest pie crust I've ever made.  I'm not sure how I'm going to adapt the blueberry pie, since that tends to require a top crust (and this would not be pretty enough for that, I don't think), but I'm definitely using it for Thanksgiving pies.  Thumbs up, for sure. 

If you're interested, the recipe I used is:

In a medium bowl, whisk together:

     1 1/2 c flour

     3/4 tsp salt

     2 Tbsp sugar

     1/8 tsp baking powder

With your fingers, work in:

     1/4 c (57g) frozen butter, grated

     1 Tbsp plain cream cheese, room temp

In a small bowl, whisk together:

     1/4 c oil

     2 Tbsp cold milk

Add the liquid to the larger bowl and mix with a fork until all the floury bits are wet.  It will be shaggy – that's okay.

Dump the dough into a pie dish and press it into the bottom and sides of the dish.  Try to get it as even as possible.  Freeze the dough in the dish while you prepare the filling, or for at least one hour before blind baking.

To blind bake, set the oven to 350F/175C and line the dough with foil.  Weigh the foil down with baking beans or uncooked rice (don't eat the rice afterwards) and bake for 10 minutes.  Remove the foil and weights and bake for a further 4-6 minutes uncovered, until golden brown.


And it was originally found here . The best part was the idea of grating the frozen butter, rather than trying to cut it, mix it, refreeze it, wait, then cut it up again.  Grating: why didn't I think of this sooner???    Anyways: Yum.  Off to finish dessert now. 

Patients For A Moment

Kathy, over at FibroDaze will be hosting the next Patients For A Moment blog carnival next week, and her topic -

"When you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?"

is, unfortunately right up my alley.

I'm currently trying to get a handle on at least two startling new diagnoses - That I am either diabetic or pre-diabetic (depending on when I take the stupid blood test), and that my gall bladder seems to want to attack me for no good reason at all.  (Which, unfortunately, makes it not all that unusual from any other organ or part of my body - "Reasons? We don't need no stinkin' reasons!")  I'm also undergoing some testing for an undiagnosed liver issue, which will bring my sum total of chronic conditions up to Way Too Damn Many + Infinity. 

All three of these new issues, plus an injury from a recent fall, have definitely thrown me - More than once I've thought to myself, "But I barely have a handle on everything I already knew was wrong, I don't know how to add these into the mix!"  And I won't sugarcoat it ~ So far, my main coping mechanism has been flat out denial:  I will deal with it by not dealing with it.  That is what I would like to do with each and every illness I happen to have ... I'd like to ignore it until it goes away.  Until it decides that I am no longer worth its time, energy, or effort, and just ... leaves.  But I also know that there is no way in hell this is going to happen.  I mean, it's not like I don't recognize that this isn't a great coping skill; it's just my fallback position. 

Still, denial can only last for so long (I hope), and eventually my brain turns back on, and I realize I have to do something.  I'd say I'm currently smack dab in the middle of this second phase of coming to terms with the newest issues that have been heaped onto my plate: Full out educational immersion.

Deep down, I'm a geek, a scholar, a nerd.  I live my life with the firm belief that there's just about nothing that can't be made better by reading about it - even when I'm upset, I'm curled up with a book, trying to connect to something that will make me feel better.  (The way I knew, all those years ago, that my depression wasn't just run of the mill sad/a tiny bit of malaise?  Was that I stopped being able to enjoy words - reading them, writing them, interacting with them... it was all suddenly bland and useless, and that's when I knew something was dreadfully wrong.)   So, faced with new challenges that I have no idea how I'm going to meet, I head to books, I head to the computer, I head to the library, and I start stuffing as many facts and theories and strategies into my brain as is humanly possible, in the hopes that something will make this easier. 

So far, I've done a done of reading up on diabetic food choices (not diets, because I am not good with diets, but choosing foods that will work better with my body's new issues), which is good, because the nutritionist they sent me to explained things like "you have to eat some vegetables every day" and "the way to figure out how many calories are in what you are eating is to read it right here on the box, let me show it to you", and was utterly useless in every single way.  I've researched what my blood glucose numbers might mean - again, thanks for all your not help, Nutrition Lady - and why the Hemoglobin A1c test that I took could have such varied results, and how I'm probably not diabetic, but I should try to address things before I become diabetic.

  I've looked up the gall-bladder (anatomy - who remembers where all those stupid organs are hiding?), and tried to make sense of the internet's explanations of how something that lives under your ribcage, down by your belly button (ish) can cause pain up behind your shoulder blade, because that is some real ridiculousness right there, human body, and it must be explained.   I've tried to figure out how to peacefully combine the gall-bladder attack prevention diet and the pre-diabetic food choices into a livable mealtime strategy.  (Have not succeeded, by the way, but am working on it.)  I've gone back to some of my favorite chronic illness blogs and looked for relatable, motivational & understanding words; Have reread a couple of books I find inspiring, in the hopes of prodding myself into taking next steps. 

I'm accumulating wisdom by the bucketloads, so that the next time I go to the doctor, I won't be so blindsided by what they're saying, and will hopefully be able to ask relevant questions and actually make progress on things.

It's not the final thing I have to do to make things run more smoothly again - at some point all of that theory and supposition will have to turn into action, and I am sort of dreading that step already - but it's still vital.  It's the 'getting my feet back under me' portion of adapting to change.  The process I have to go through to go from "Hell's no: this is not happening again!" to "Ok: it's happening, let's deal... I know I can pull this off!"   

Yes, I'm disappointed to find myself, 17 years later, under continued attack from so many various parts of my body.  Yes, I'm frustrated as hell that, instead of improving, things just seem to keep getting worse and worse, and that I still haven't gotten to the root of these illnesses, or figured out a way to get rid of them, or how to achieve all the things I want to achieve in my life.  It's beyond frustrating, so much so that when I went to the thesaurus just now to look up a stronger word, one that fit better, I couldn't find one.  It's all of them - upsetting, disheartening, prohibitive, discouraging, defeating, baffling, hindering, depleting - every synonym, all combined together and multiplied a few thousand times.  All of those words to the nth degree. 

But, when I find myself here, at a place that is both familiar and shockingly not, faced with new diagnoses all over again, at least this time I've got some idea of how to get further along down the line:  Stuff brain with as much as it can handle, take breaks in denial land as needed, and know that you can handle it, whatever comes.

I'll share what I like, where I like, Google: You're Not the Boss of Me.

I know I just talked about how much my internet was bothering me, you know, yesterday, but I've got another internet related complaint that I want to talk about today: The loss of Google Reader's like and share functions.  I didn't use the Share in Reader option too often, only for things I was exceptionally excited/depressed about, but I miss it just the same.  Mostly because I could follow other people, and their shares were usually amazing and awesome.  And I miss the ability to like things, because I could just press L when I liked something, and my reader would remember it for later, and I had all these requirements for starring something vs. liking it, and Google has messed all that shit up, because now I have to "S" all the things, and that's just not right. (Whatever: doesn't everybody sort their feeds into a million categories?)  

Google tells the detractors to the new Reader that there's a +1 button, and that it's almost exactly the same as share and/or like, but there's one big difference: In order to +1, I have to register for Google Buzz.  In order to register with Google Buzz (in my experience, and what I've been reading about other's on the web), you have to forgo any shot at internet anonymity.  In other words, I have to use my real name.  My Google Reader was just initials, and I was able to share stuff with two separate groups of people: People who knew me IRL and knew my initials, and I told them how to find my reader OR people who knew my G-Mail through this website and found me that way.  So I could share things with people, without sharing ME with people.

So I'm stuck with not sharing, and not liking, and so I came here to tell you that I don't like the un-liking and un-sharing.  It's stupid.  But, because this is my blog and I can put anything I want here, here are some things I would have liked or shared, over the past little while. 

This AMA Reddit thread, where my favorite astrophysicist, Neil deGrasse Tyson answers questions  (Which, technically did not come through my Reader, but my Reddit & Twitter accounts, but still: Is too much awesome not to share.)  Example of said awesome?  When asked about things that blow his mind:

2) That Quarks come only in pairs: If you try to separate two of them, the energy you sink into the system to accomplish this feat is exactly the energy to spontaneously create two more quarks – one to partner with each of those you pulled apart.  

How cool is that?  And how cool is it that I know that now, something about quarks?  I won't forget it either, which is why I heart Neil deGrasse Tyson: He makes science relevant and interesting.


 This post by the Smart Bitches, where they're asking for recommendations for books whose main characters have disabilities.  Because I am constantly reading these kinds of books, and want MOAR, and because the Bitchery manages not to drag out a lot of tropes that I can't stand (Magical Cures: No, Thank You), or, for the most part, calls out the tropes when they see them... Exception to this rule - some people there have recommended books by Catherine Anderson, because the heroines have disabilities.  While that is the truth, they are just... not good.  I refer you this recent Goodreads thread,  but also, just to common sense: the only thing these books are about is that the character is disabled.  So that's all the author has to talk about as far as those characters go.  She is "Girl in Wheelchair", "Blind Girl", "Deaf Girl" (and always girl, never woman); it is the sum total of her characterization, and the result is some horrible stuff.  Anyways, aside from that, a lot of good recommendations (I've read some, added some to my TBR, and will go back to mine it again.)  I can post some of the best, or links to my Goodreads reviews of them, if anybody's interested in some of the better ones. 

(And that last item reminds me that I haven't talked about the return of Barbara Gordon as Batgirl.  Which I am definitely going to do, as soon as I read the first three issues of Batgirl, to see how I feel her return is being portrayed.  But I can say, even though I haven't read them yet, that I already miss Oracle.  And what she meant to a lot of readers with disabilities, and specifically me.) 

And speaking of comic books, there's this article, regarding what one writer sees as the hypocritically sexist 'neighborhood' of superheroines.  She makes some points that I think are valid:

Most of all, what I keep coming back to is that superhero comics are nothing if not aspirational. They are full of heroes that inspire us to be better, to think more things are possible, to imagine a world where we can become something amazing. But this is what comics like this tell me about myself, as a lady: They tell me that I can be beautiful and powerful, but only if I wear as few clothes as possible. They tell me that I can have exciting adventures, as long as I have enormous breasts that I constantly contort to display to the people around me. They tell me I can be sexually adventurous and pursue my physical desires, as long as I do it in ways that feel inauthentic and contrived to appeal to men and kind of creep me out. When I look at these images, that is what I hear, and I don't think I even realized how much until this week.

 and others I can't comment on because I'm not an avid comic book reader, but it was definitely something to think about.  Comments not recommended, by the way: horrid. 


 This quote  

Those are the best things about having kids, is just those everyday, really funny, weird moments that you could never predict, that completely change your mood and, you know, open up your heart.

  and this photoset of Amy Poehler, that sums up exactly why I want to have a family. Why you'd put up with the colic and the clutter and the "oh my sweet jesus, why are you not wearing clothes-we have to leave right now and you are suddenly naked for no reason" and the "holy god you are only eleven years old, you do not get to pretend you know everything already" moments, just for a "My pleasure" every now and then.

On a more serious note, there's this HuffPo piece by Eve Ensler, which sums up pretty much everything I feel about rape and rape culture.  I'm over it, too. And neither of us is alone: here's Amalah's post about Penn State (her alma mater); and how over it she is as well. 

And two webcomics to round things out.  First up, from  Cowbirds in love :

Cowbirds in Love is awesome, in case you were wondering.

And lastly, from I don't know where, and I hate it when a backlink disappears: , which basically sums up my entire life right now.

I finally decided to take a page from the rest of the internet, and joined Twitter.  I'm @NeverThatEasy, if you're interested.  I have yet to make a single tweet, however, so there's not much to be interested in, as yet.  Right now, I am basically using it to stalk awesome people: Wil Wheaton, Rainn Wilson, Neil Tyson, Nathan Fillion.  Random awesomeness, in 140 characters or less.  I can see why people like it so much, but if there's anything that proves I'm a horrible over-thinker, it is my complete inability to compose a 1st tweet.

So much (wholly imagined) pressure!

Because tweets are forever, like the rest of the internet, but also because... well the awesome people I follow are so good at it, this wrapping up your life wittily in a minimum amount of words.  I - as you know if you've been here for any amount of time - am a bit more wandery in my worditry.  (See: also, I like to make shit up.  Although that seems to go over well on Twitter, so that works in my favor.)  Also, really I have very little to 'update' as I go through my day.  "Haven't left the house except to go to the doctor in over two months" is neither pithy nor interesting, but it's true.

My truth is pretty boring right about now, so I'm trying to come up with some imaginative stuff to tweet.  And not tweeting is no big deal, at this point.  I'm just gonna Twitter stalk the amazing people, and I'm sure something will come to me eventually.

If you're on Twitter, feel free to put your handle in your comment, and I'll follow you, too: give me some more awesome sauce to stalk.  (Or if you follow the funniest/most interesting/most relevant person, let me know that too!)

Ah, Twitter: yet another time suck!

A few links for your Friday Night

Here's one that nearly had me in tears: An Open Letter to the Fat Girl I saw at Hot Yoga in NYC. The part that got me? 

Oh Fat Girl at Hot Yoga in New York, are you at war with yours, too? Has it let you down? Are you angry with it? I am. Righteously furious, actually.

This stupid body that has failed me in so many ways these last two years. It has been endlessly sick. It has required surgery and bed rest and vicious medication that got me well, but made me feel sicker.

I AM VERY ANGRY WITH IT for being sick, for getting fat, for not doing what I SAY.

But I am nice to it anyway, three times a week, at Hot Yoga.

Because I am A-OK, ALL FULL UP, TOTALLY ON BOARD with the being angry at my body. I would excel in that class, were it offered. But I'm sorely lacking in the being nice to it anyway department. She says 3 times a week for 75 minutes, she cuts herself a break, takes this class. I can't remember the last time I had a nice thought about my body and what it was able to do. When even breathing hurts, it's hard to be happy that you're taking a breath. It's hard, but it shouldn't be impossible. So I'm going to work on that.

Then there's the beautiful Kate, over at sweet|salty, who writes (with such grace and clarity) about something a feeling that is neither graceful nor clear:

The word 'anxiety', especially preceded with the word 'my', needs to be benignly neglected in the way that you ought to benignly neglect that kid who keeps saying the f-word at supper. The word 'anxiety', in its reference to a constant and entirely unspecial human state, needs a yoga retreat with a workshop about how inspiration is a myth that will only stunt its creative process and land it in the 75% of writers who will never type The End.

She talks about fitting in, and excluding yourself anyways; about jumping into the ocean and braving sharks, but hiding away while your friends roast marshmallows. She talks about living, really. And fear.

Sometimes, it's nice to know that other people are on the same page as you.  That's how I felt when I read this post from Black Hockey Jesus:

Do you remember, little girl, where we were when we read that book? There was no you or me or the circus of problems where the mind loves to play. We weren’t in a bed in an apartment nor could we be confused with the characters in The Miraculous Journey of Edward Tulane. We were simply gone. We gave way. We became the empty place where stories arrive, where they show, come to be told, appear, where they happen. Because it happened, didn’t it?

The magic of reading is overwhelming sometimes, and in his letter to his daughter, BHJ manages to capture that so, so well.


Lastly, there's this, a quote I had in my files for a while, but I saw it somewhere this week, and it was like a life preserver.  Delivering some hope, when I need it most:

It doesn't matter how long we may have been stuck in a sense of our limitations. If we go into a darkened room and turn on the light, it doesn't matter if the room has been dark for a day, a week, or ten thousand years -- we turn on the light and it is illuminated. Once we control our capacity for love and happiness, the light has been turned on.
—Sharon Salzberg

See you guys tomorrow! 

"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