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