admiration


Thanks are due to Kristina Chew for inspiring today’s post.  Over at her blog We Go With Him, Kristina shares her response to a post by the blogger Smockity Frocks about the terrible horrible no-good very bad behavior of an obviously autistic child who was waiting to use a computer at a public library.  There’s a fair amount of discussion about the post itself and its bloggy aftermath here.

Kristina’s post and the responses in the comments thread, however, led me to stick my long, poky, crip-power-disability-advocate nose into the business, and talk for a while about why I think “awareness” is, quite frankly, damn near worthless without the willingness to confront the ableism that awareness itself can inspire.

Here’s what I left on the comments thread:

I was able to google up a cached version of Smockity’s blog, and I’m sorry Kristina–I really don’t think this is a person who will be helped much by all the “awareness” in the world. Honestly, when Smockity only thought the child was spoiled, her response was within the realm of the frustrated-but-amused; when she was forced to confront the idea that the child might be autistic, her entire attitude underwent a change to semi-revolted sneering.

While it might be tempting to characterize ableism as a matter of ignorance, or as the inadvertent stigmatizing that occurs through the well-meaning attempts at “compassion” by the unaware, the fact is that for many, disability and difference (particularly neurodivergence) can provoke something very close to genuine hatred. Until we can accept this, and until ableism is called out for what it is and not simply termed a lack of “awareness,” it will never be possible to truly approach the heart of the problem.

Smockity’s response to the comments which attempted (with remarkable diplomacy) to assist her in developing “awareness” was a perfect exhibit of this sort of ableism. From her immediate medicalizing of the suggestion of the autism spectrum (“well, I don’t know her medical diagnosis!”), to her continued use of scare quotes around the term disability, to the subtle intimation that autism or no, the child she observed (and by extension the autistic children of the commenters and for that matter any other autistic child) was more the product of poor parenting than anything else, and the unstated but ever-present sense in all of her replies that she didn’t quite believe in this autism thing anyway, her tone never varied. Nothing in the (frankly, far sweeter than deserved) comments attempting to raise smockity’s “awareness” were able to penetrate that ableism.

The community of special-needs parents and the community of disability advocates are too often separate, and in many ways do not even speak each ther’s language. The special-needs parent wants to believe that if the observer knew of her child’s unique situation (“she has asperger’s” or “he has Tourette’s”), they would welcome her child with love and understanding, or at least benign neutrality. The disability advocate has often spent a lifetime forced to raise “awareness” of his or her condition (often whether or not the advocate would choose to: a certain amount of explanation is demanded in exchange for even the most minor of disability accommodation), and knows all too well that with awareness of disability comes the relegation of the disabled person to the status of “one of them”–and where the ableist is concerned, “they” inspire revulsion, fear and often hatred.

If the special-needs parenting community is unwilling to accept these realities as its own, the crusade to spread “awareness” will be at best a plea for charity (“please have pity on us, my child simply can’t help it!”) and at worst will place parent and child squarely in the crosshairs of an ableism with which they are unequipped to contend. The tools of the advocate–which include an unflinching willingness to identify bigotry and ableism for what they are, and the willingness to grapple with the anger and grief of such a realization–are a necessary part of arsenal of the parent who hopes (and fights) for full inclusion.

 

What do you think?

(A later note:  I do want to point out that, as a divinity school student, my favorite part of the story is that while this lady sneered at a small child, she was unable to do much more about it [like, say, offer help] because she was busy reading her Bible.  Because every post that references Kristina must contain this word, I’d like to say that that part of the story is particularly awesome.)


Headless cemetary statue, no icon. Last year I swore I’d know how to do this by the time it came up again… don’t you guys think the above would make an awesome disability blog carnival icon?

Last year’s carnival wasn’t quite about birth, just yet, and appropriately this year’s tackles the subject of death from one of the most death-shy people you’ll ever meet. As I mentioned recently to a friend, I’m that life-at-all-costs jackass who harumphs when someone decides they’re too goddamned tired for their fifth round of chemo, who has made sure everyone around me knows yes, I would too want to live like that, and who has no patience for the idea of bowing out gracefully so as to avoid being a burden. I’m all about being a burden, as my husband and children will attest.

Nonetheless, I have a death fascination of sorts. For a long time, I thought quite a bit about becoming a funeral director (although I don’t think I have anough of a grasp on the realities of that particular job) and half of studying religion is studying how to die.

The other half, at least presumably, has something to do with spirituality, which is another theme for this Carnival.

Death

Spirituality.

End-of-Life “issues.”

Most of the the disability bloggers I’ve read have, with varying degrees of eloquence, had to tackle those issues, and on the whole have managed to do so with grace, honesty, wit and sometimes anger. In their own words, then

It isn’t nice and sweet, this carnival. To begin, we’re going to take a look at the case of Esmin Green, who, as Day in Wshington reminds us, had a name other than “mentally ill woman.” Harlan Ellison once said that no-one should go into the ground with too few words spoken, and Stephen Kuusisto of Planet of the Blind has a few to say about Ms. Green’s death. I thank him.

I don’t think there are enough words for the death of Harriet McBride Johnson. Certainly, the ones that occurred to me seemed trite and inadequate–“hero,” “inspiration,” “courage”–all true, but a bit too telethon-ese for that particular warrior. Thus, I’m going to let Kay Olson at the Gimp Parade speak for me, in her wonderful tribute to Harriet’s life and work.

In Secondhand Smoke, the issue of disabled lives continues to be debated in a hot discussion about Delaware’s proposed resolution protecting cognitively disabled people from euthanasia–and an argument about the term “brain death” (and how it is often confused and conflated with static encephelopathy and PVS) follows in the comments section.

End-of-life issues come to the fore as cherylberyl blogs her ambivalence in a post on disaboom called Would I Want to Live? I really like her style of writing, its very young and fresh without being cloying, and she puts a lot of things that I’ve thought myself in a calm and simple order.

In her raw and honest letter, Ruth at Mom’s Musings looks at how some of the same questions can be asked at the beginning of life, and how those in authority might not be ready to hear the answers. This one is a must-read; I’ve been hoping to see more parents of children with disabilities participate in these carnivals. Ruth is a wonderful discovery.

Another post relating to children: from Adventures in Daily Living, an imaginary phone call that tells the whole story, Meanwhile, Kristina Chew at Autism Vox asks the hard, but essential, questions about “independence” that will shape her son’s future. On the subject of childhood, Disability Nation takes a look at the new “disability dolls.” For the record, I like them very much. I don’t have an ideological explanation for that, I just… like them. It’s a doll thing, I suppose.

Two post by Bint at My Private Casbah are of interest to the topic. In Don’t Call me Differently Abled, she discussed how the saccharine euphemizing (my term, not hers) in the Differently-Abled label actually depersonalizes disabled people by refusing to acknowledge their reality. Also, in a post on Meals on Wheels cutbacks, she gives a harsh dose of reality about the life-or-death need seniors have for these programs.

Emma at Writings of a Wheelchair Princess has written specifically for this carnival, and has done a marvelous job. Her post on the Three D’s is extremely powerful, and includes a wonderful quote that she (rightly) feels is relevant to this entire carnival.

At Touched By an Alien, Laura affirms life, with a post on the best time of her life. Something about this short entry brought home to me exactly how evanescent any “best time” really is–another reason I decided to host this carnival, I suppose.

Paula at E is for Epilepsy also agrees that one cannot learn to die who has not learned to live (yes, that’s totally backwards, remember this is me putting together a late blog carnival while trying to read about redaction criticism) and for Paula, education is the key to a life well lived.

Frida Writes has a post on how issues of sexism affect women’s health and survival, both in the diagnostic process and in their actual survival rates. Women, she points out, are more often told to “think positive” and at the same time often have their symptoms dismissed as being all in their heads. I’ve experienced this myself; many of the female disability bloggers I’ve met (particularly we sickies) have a long history of being patted on the head and being treated for depression, only to later, when the indisputable facts of illness are laid out bare, be told that our positive attitudes will make all the difference.

Elizabeth McClung at Screw Bronze has decided to tell her positive attitude where to go in Angry, one of several important–and immortal–posts she’s made this month. I have to include more than one Elizabeth link here, because the carnival also needs her Letter #1 on Dying, which includes, in the comments page, a startlingly insensitive but genuinely-felt rant on giving up from yours truly–Elizabeth may be a boxer, but I’m the world champion in unsolicited advice for my weight and size.

None of us, whatever decision we make, are taking the easy way out; if there is one, I’ve yet to find it. One of my favorite blogs, I Trust When Dark My Road, contains a recent post “Longing for the Fleshpots of Egypt” about despair as disability, and just how elusive that “easy way” really is.

I include Pentimento’s post on Margaret Sanger, the culture of death, and individualistic spirituality, because the ideas she expresses touch on many of the things I see in the other posts included here. While not disabled herself, the author of this blogs has confronted loss with both gracefulness and grace. I don’t expect everyone to agree with her summation of the New Age movement or her appraisal of Sanger, but whatever one’s political, social or religious beliefs might be, the issue of eugenics in modern culture is one from which people with disabilities cannot hide.

I’m closing this carnival with a post on the funeral rites for Emperor Norton. Although the piece touches on Norton’s disability, asking why other mentally ill San Franciscans were locked away while an attempt to have the Emperor involuntarily committed nearly had the city in mutiny–it isn’t the full disability-studies treatment that Norton deserves. Maybe one of us will write that one.

Thanks to all of you for letting me host again. This isn’t quite the carnival I wanted it to be–I wanted something of my own here, and I wanted a chance to really delve around the blogosphere finding hidden gems–but school intervened, and I hope I haven’t disappointed too terribly.

I just saw a friend of mine off, taking a nice open-moonroof windy evening ride down the West Side Highway. She’d come up to help me get through this last attack. We hadn’t seen each other in ten years.

One week ago, I did the thing that everyone is always saying to do, rule number one, don’t be afraid to ask for help. I did. I was at the end of my tether. It was the middle of the night, the pain was really bad, I was in The Chair (that’s the hideously uncomfortable armchair I get stuck in when I’m ill) and couldn’t get up, my husband was on Round Thirty-Five or so of the Dicked-Up FMLA Drama he’s been dealing with at work, and I had no clue whatsoever how I was going to manage the week, go back to school, or get those damn steroids, nevermind simple things like eat or take care of my children.

I put out a Distress Call. Maybe someone reading this even got it. A few sentences, a BCC to the entire “friends” list in my address book. Which resulted in some expected and unexpected offers of assistance, some from pretty far away.

I was terrified about the idea of having someone to stay in my house. I don’t really have friends, really… or rather I do, but not in the “come to my house!” sort of way, more in the I-commented-back-on-facebook-last-month-so-you-must-know-I-care sort of way. I actually met this friend of mine, Miss X, when we both were little La Leche League punk-rock chicks, with our scruffy soulful babies and copies of The Continuum Concept. We met via a parenting email list and immediately bonded as the only non-older, non-upwardly-mobile parents on said list. We met up in an equidistant city with the kids, and kept sporadically in touch. Fast-forward a few years, some really bad times in both our lives, MySpace, and a phone call or two. And then, she was offering to get on a bus and come two states over to help me out with the kids while I had steroids and got better. What’s even more surprising is that I said yes.

For the past few minutes, I’ve been trying to compose my statement of gratitude, because while the help was priceless (and–most rare and wonderful of all–unobtrusive) the simple act of friendship was stunning. Thank you. For three days I shared my space while recovering, and I couldn’t in a million years have imagined that would have worked out.

I was reading Elizabeth’s recent post on death, which struck a chord with a lot of people, and it got me thinking about this whole blogging thing, which I do on rather a smaller scale than a lot of disability bloggers but enough to now “know” people that I don’t know in real life who, seemingly, care enough about me to worry and offer good wishes. And I wonder sometimes if part of the compulsion to not only keep writing but to keep reading, to see what everyone is doing today, is about. I want someone to know if I let go and slip under, if Elizabeth does. I want it to be important enough for someone to say hey! where is she? can I do something? And yes, I suppose if that means I have to join the human race for a while, then so be it.

Save me, O God,
for the waters have come up to my neck.
I sink in deep mire,
where there is no foothold;
I have come into deep waters,
and the flood sweeps over me.

I’m not very good with people. But if this does happen to me, I want someone to see.

Phoebe is “due” today.  

Or rather, is 40 weeks pregnant, something of an arbitrary deadline actually, but a perfect time to send her some good thoughts.  She’s having an unassisted birth, something I thought very long and hard about doing, and still think that maybe I should have done.  UC’s are, from my perspective, both beautiful and scary.  It does make me want to send some extra love Phoebe’s way.  

There are manymanymany good-childbirth-type deities out there.  May they all watch over her. 

<img src=”DSCN2385” alt=”” />
description: A photo of me, wearing my sleeping son in a leopard-print sling, handing out flyers at a recent nurse-in… actually the nurse-in so publically scorned by Bill Maher. Douchebag.

I am so utterly beyond thrilled to have found the forums at The Baby Wearer. Particularly because there’s a forum that focuses on wearing one’s baby when one has a chronic illness or debilitating condition (or when the baby does). Apparently, if people can be complete jackasses when they see a relatively young woman park a car with a handicapped placard, that’s nothing to their response when said woman slings a baby onto her back.

The cultural bias in favor of strollers ignores the fact that toting around one of those behemoths would be the end of many a sickie mom. Nevermind the positive aspects of babywearing, which I strongly believe in–it simply wouldn’t work for me to tote around a Bugaboo or MacLaren. My hands don’t grip well enough, I de-stabilize the thing by leaning on it, and mostly because I travel light. Don’t even get me started on one of those bucket seats. I couldn’t even fathom lugging around something like that before I got sick.

Now, my new favorite pains in the ass might be the people who feel that it isn’t “safe” for me to wear the baby. I’d be more inclined to listen to these types if their objection weren’t to the baby’s being safely nestled in the sling, because it’s true that sometimes I feel a little off about carrying the baby, due to arm weakness. Which is why the sling is such a joy. And seriously, if I’m not well enough to sling him, it generally means I’m not well enough to be up and about with him anyway. And supposing the gait problems were to flare up again, well, then I suppose I’d wear the baby in the wheelchair… it’s a pretty common solution to that particular problem, really.

Of course, I’m persona non grata among able-bodied moms who find babywearing “too hard,” because my very existence is a reproach. I have a debilitating, fatiguing illness, and find babywearing as easy as eating. Which basically means that these women didn’t really want to babywear, very much*. It’s like a woman I know, who has lupus and who also works out to a point of dieseled physical perfection that makes me question my sexuality. I don’t claim to know her whole constellation of reasons for working out, but I’m pretty sure that one of them is simply: because she still can. Lupus is a bitch. I’m sure when people moan about how they’d go to the gym if they weren’t feeling so crappy after their long day at work, they don’t have lupus in mind. And yet. Somehow she manages, and probably couldn’t do without it.

Baby care with MS is like that, in general. I couldn’t do otherwise, and the questioning about whether I don’t find nursing/babywearing/nighttime parenting stuff “too tiring” aren’t really relevant to my reality–if you want to help, help me do laundry or something, but please don’t lecture me about how I should be parenting in order to be easy on myself. I am. I just wore the baby through my most recent flare-up, and didn’t feel like a martyr. I do the best I can with what I still have, and I don’t feel I have to give that up.

* Should a close friend who reads my blog think that this is about her, it isn’t. You’ve never given me grief about babywearing, and you’re too hard on yourself in general. You taught me how to use a wrap. You’re lovely.

No, my little one is not here yet.

Katie McCarron’s fifth birthday would have been today.

As I’m waiting for my own child, I can only hope to be blessed with a child as wonderful and precious as Katie was.


(description: A Victorian dollhouse family consisting of mother, daughter, and baby in pram. I, however, have no baby in pram since I was apparently in “false” or “pre” labor, whatever they’re calling it now.)

Whatever labor might have been last night, it petered out about 2am, to return only intermittently (“Another contraction! When was the last one, honey?” “Ummm… ninety minutes ago.”) Apparently this happens all the time, although I’d likely have been induced or sectioned in a hospital by now. Inconvenient, I’ll say that much.

But, in my time-killing this morning, I came across this awesome* article in the Observer titled The New Victorians. Like most NYC-centric culture-puff peices, it focuses on a phenomenon that’s been going on for a while and skews it entirely towards rich people, still, it isn’t bad. If you’ve read Alan Ehrenhalt’s “The Lost City,” you’ll be familiar with the “blame the boomers” argument. In my opinion, the best bit of the article is the closing paragraph, which my husband simply loved:

“You have to confront this question of, ‘Am I a deeply conventional person?’ she said. “It kind of throws the idea of who you thought you would be into question.”

*In other news, more than one person has lately commented on my incessant use of the term “awesome,” including Kristina at Autism Vox. What can I say, I have a nine-year-old girl, a GenX husband, and an often-affectless voice that makes the term sound really cool.

What I do not have, however, is a baby yet. Not awesome.

********

Thanks to all who said nice things about the Blog Carnival; I now appreciate how much work the rest of you do putting these things together!

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