"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

Being Seen (pt1)

A while back, when my sisters were still fighting (and oh, what a miraculous, fragile peace has somehow bloomed there, and oh, what a frightening and vivid relief it is), one of them found the other's blog. The blog in question was semi-anonymous, in that I knew about it, and her husband and some friends, but she never really said to anybody "Hey: I am writing a blog - Why don't you come check it out?" Well, through some confounding sort of linkage that I am unclear on, the blog was discovered by the sister she was arguing with, and, of course, there were some ... unflattering things posted about her there. Later, in one of my many, futile peace-brokering discussions with her, she brought up something that had been written in the heat of anger, saying "If you can write something like that about someone, can you really love them?"

That discussion has had two clear impacts on my blogging - First, I've become more frightened than ever that some casual linkage, forgotten signout, or dropped conversational hint, will bring my anonymity here at NTE to a close. It's a terrifying thought for me, since I know that as myself, without the slim protection my pseudonym provides, I could never be this honest. Aside from the fact that I've opened up hidden parts of myself and shared a lot of things here that the people in my life would be quite surprised to know, I've also written more than one post in the heat of anger, said some things I would regret if they were read by the person they were written about, and what I've written would be sure to hurt some feelings.

Which brings us to the second impact - that fear of being found (which I know I must be, eventually, and here I am, coming up on 6 years blogging) is acting as a very real barrier to the honest writing I've accomplished and been proud of here. I find that I'm stumped, wanting (as always) to say what I want to say, knowing that it's my truth (even if it's only my truth in that moment, and changes immediately afterwards), but temporarily lacking the courage to accept the consequences that will come about when my anonymous bubble is burst.

The clearest example of this is the sister who already knows about my blog, and has (thankfully, sweetly, fabulously) kept it to herself for however many years she's been reading: I know there are times when I censor myself - what I'm going to talk about or not talk about, how I'm going to say it, whether I add the pros to a piece that started out more as ranting compilation of cons - because I know she's out there, among my proverbial audience. (Even though, in all honesty, I've seen her Google Readers - she has two! - and I'm pretty sure she's a zillion posts behind.... Hi SisterJ: How's January of 2013 treating us? Did we survive the Zombie-pocalypse? ;) )

Between this element of self-censorship - the fear of how others will feel about what I've said about them - and the fact that everything I want to talk about lately is all part of a big sticky, jumbled up mess that my brain just laughs at instead of trying to make sense of, I was pretty sure that I was going to be shutting down the blog - at least for a while, and maybe permanently.

It was not just that, though: It was everything - It was because every time I come I see that the footer banner is 2 years out of date, and I'm sick to death of the color scheme, and I don't have the energy to re-vamp the whole thing right now. It's that I've already said everything that could ever be said about the power of books and the suckiness of living with chronic illnesses, and I have maybe 7 readers, and aren't they sick of listening to me already?

It was a lot of bullshit, really. A lot of excuses I was letting myself get away with, because I was too scared to come here and say I was scared. That I'm stuck: again: Still. (seems like) Always. It's the reason that my last post was the easiest, and most honest thing I've written in months: because the reasons not write, not to post, not to share are always there, and wouldn't it be so much easier if I just gave up on talking to the world-at-large (on my very small scale) and just tucked it all back inside again?

Hells. No.

(But also: Absolutely.)

So I'm afraid: what of it? I'm nearly terrified of pretty much every single thing my adult life has thrown at me thus far - why should this be any different? Maybe the fact that it's getting scarier is a good thing? Because I'm doing things I ordinarily wouldn't do: Putting down truths that are hard to think, let alone write. Taking my time when I need it, even as I feel the rest of the world speeding forward without me. Letting shit go, if it doesn't matter, and not letting shit go, when it does. Being a fucking grown-up, when you come right down to it.

So that's my plan: keep plugging. Don't let the bastards get you down! Lots of cliches about overcoming obstacles!

And one way I'm going to be doing that is by setting very real, publicly posted goals: Not letting myself get away with all the excuses.

Which is one reason I'm excited to be hosting my very first every Disability Blog Carnival, should ya'll be interested in contributing/attending/watching from afar. It's going to be on September 27th, and - since I was always the kid in school who liked a little bit of a framework - I've decided to provide a non-compulsory theme to help out those who feel they want it: Being Seen. It's something I'm struggling to work out for myself, so I figured I'd ask how you all are handling it - How do you want to be seen? How are you seen? Do you feel invisible? What aren't people seeing that they need to see? Are you looking for a way to get noticed, or are you hoping that nobody will?

Please don't feel like you have to stick to my theme, though: if you've got something to say, I will find a way to make sure it's included. Since I don't tweet, and my FB is obviously off-limits because of anonymity, you can either leave a comment here with your e-mail or a link, or you can send it to my e-mail (link above). Looking forward to all the entries, and on being back here, in my space, saying what I need to say.