I am constantly learning that for most non-disabled folks the default mindset regarding disability is tragedy. There seems to be some kind of genetic need to understand difference as abhorrent and wheelchairs as the symbol of captivity. I keep running in to these attitudes, the attitudes that completely shore up the hierarchy between those who walk and those who roll, or those who talk and those who sign, or those who think quickly and those who ponder slowly, or those who love chaos and those who require sameness. A hierarchy that leaves one feeling somewhat pleased to simply not be the other. And it always surprises me.

-Dave Hingsburger

I don’t have the energy or, frankly, the time… or the calm, measured but kind words that would be necessary to really do this justice, but I am probably going to be writing a series of posts about the response my disabilites have elicited in my new environment.  I’m not in NYC anymore, but a smaller city, studying at a divinity school attached to major Ivy League university.  It’s nice here. 

But people at divinity schools have a different way of dealing with the direct visual experience of another’s disability (than do solipsistic undergrads at big urban universities, for instance), and I’m finding that I have none of the tools to navigate this.  I am, to put it quite bluntly, finding myself utterly worn to a frazzle by the solicitous care, concern and curiosity of genuinely good, kind, compassionate people into whose sense of mission and calling I fit precisely into a prescribed role. 

This is often a role that (as the readers of this profanity-laced and often immature collection of rants will immediately recognize) I have some trouble fitting into–and I’m not really sure that I want to.

I’ll have to write more on this in the time to come.  For now, suffice it to say that I’m in the market for new ideas on how to nicely (that’s important, everyone is nice here, the Waif is not so nice, so this  requires careful planning) send off signals that I don’t want to be approached–because one of the interesting side effects of the disabled-person-as-object-of-mercy model is that normal social rules of approach are suspended.  If I’m using my wheelchair, I eat my lunch with a book in front of my face to ward off the smiles, pats on the back, strokes on the arm, and “oh honey–not a good day today?”s that come my way.  It doesn’t work.  Nothing works. 

I will not quit smoking.  It has become the only way for me to take a moment outside in my chair without the deluge of offers of help.

Of course, like any struggling grad-student-parent-with-a-preteen-and-a-toddler, I’d LOVE some help, but not in the ways they mean.  They’re lovely people, the pastors-of-tomorrow who approach me, and I’d trust them anywhere–so I’m seriously considering hitting them up for babysitting when they come rushing up with their offers of assistance.

Either they start steering clear of me lest they be put on the spot, or I get some free childcare.  WIN-WIN, right?


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.)

I have a whole pile of things that piss me off that don’t bother other people at all.  At the top of the list would probably be someone petting my arm, but I also don’t like cold cereal with milk, white foods, or when people quote The Simpsons.  However, special hatred is reserved for truncations of words.  Those cutesy little shorten-ings y’all so love to do these days?  No.  Prisoners are not being mistreated at “gitmo.”  A bank called “wamu” did not recently, spectacularly, fail.  And I most certainly am not participating in something called (feh) na blo po mo.

That said, I’m trying to do that posting-every-day thing for November.  Because I’m swamped with academic work, I have too much to do, and I get more done when I take on too much.  If the expectations are sky-high, in attempting to meet them I usually surpass what I’m capable of when operating with “reasonable” expectations.  A wildly productive failure, as it were.

This is something I should have realized about myself the instant I got sick.

No matter.  I’m back to the blog and have many, many things to write–all about my year-long spiritual crisis and its possible resolution, my re-dedication academic life, the fact that I’m embracing a couple of “alternative” MS treatments (don’t worry, I still take my medicine) and actually finding it helpful, how I used my wheelchair to build my body back up to a functional state, and how some recent new acquaintances have made me realize that I owe a tremendous debt to the disability community.

This last subject is huge, and I don’t know if I can do it justice.  I’ve now met several other crips or chronic sickies who, for whatever reason, have chosen to be outside the disability community, and their level of debility, of broken-ness really, is simply staggering.  And I know–I know–that I would have been the same god-damned way if I hadn’t found my way here.  The fulfillment of the sick role, as it were.

SO thank you, first of all, Jen.  You were the inspiration.  And thank you Disability Studies at Temple, and Not Dead Yet, and Ragged Edge, and ADAPT, and Katja Stokely and Kay Oleson and Amanda Baggs and Dave Hingsburger and Elizabeth McClung and and and.

My Academy Awards speech notwithstanding, I find myself now on the other side of the fence.

The challenge, I think, will be to extend my understanding, offer options without proseletyzing, and to keep my anger in check.  The anger arises, by the way, when I meet someone who has convinced themselves that a sick person “cannot” or “should not” do X thing–generally something I do–because I experience their defeatism as a direct threat to my own freedom, the freedom I’ve wrestled and fought and clawed to get away from the disease.  So yeah–it gets hard for me to meet someone who not only is not clawing but who smiles patronizingly while intoning what can and cannot be done, without wanting to start slapping them over and over until they get up and stop me.  Because I’d rather see them angry than so complacent in debility.

Over at Multiple Sclerosis Sucks (link forthcoming, it’s a super-cool site) there’s a spiffy little essay about how people who try to tell sickies that “you’re only as sick as you feel!” need to shut the fuck up.  And, well, word.  That is not what I’m talking about  doing.  By all means, tell me how sick you are, and I’ll believe you.  But don’t tell me how sick sick people are in general.  Particularly when you don’t know any, because the community has nothing to offer you, and so you’re the Sick One among your social scene and deeply locked into that role.

I want to start writing again about the pain and anger and sometimes humiliating physical aspects of what I’m experiencing, and I want to do it without seeming like I’m giving up or like I’m “overcoming.”  And yet everything I say seems to fall into one of those categories.

I’m giving up because I accept myself as defined by the diagnosis (diagnoses, now, and I’ll write about that too) and take it as an intrinsic part of who I am.  There’s no “real me” hiding within the illness–it is me.  And the fact that I’ve chosen to live a highly demanding life (physically, mentally) does not mean I’ve “overcome” anything–simply that I, the sick I, have chosen to drag my sick body around in this demanding way, and I have a right to do that.

The world is full of motherfuckers who will tell me I should have the “right” to die, because my life is worth less than a whole, hale and healthy person, but who will deny me the right to push sleep deprivation, exercise, rough sex, whatever to the point that I do.  Because, you know, I’m sick.  And sick people don’t.

Lots more to write, I think.  Happy November.

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.



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.

So I haven’t been around lately, because I’ve been, seriously and for real, actually out of the house for once in a while. No lie. This hermit thing is for the birds once summer hits, and I’m doing my best to actually get the kids in the open air as much as possible.

This is all made much, much easier by the fact that I have my new chair, which is utterly slick, and can now do things other than clutch my husband’s arm all day or somnambulate wincingly from parking-area to place-to-sit. It’s a good thing. Mostly. Sometimes it’s not, for reasons which are beyond my understanding but seem to revolve around the fact that I’m so terribly little and so terribly attractive. Or something. I don’t actually know many other people who have gotten quite as much of this sort of attention, although if I’m wrong please vent away in the comments section because holy hell, people can make some jackasses of themselves, can they not?

Case in point: Lately (as in, since I’ve had this chair and have no longer been a bitter, reclusive, jagged little housebound pill) I’ve been heading up to Local Rather Ritzy Little Suburb to do my work at Starbuck’s, take the kids to the park, wander around drinking espressos with my husband, and all the other things that I just plain haven’t done for a while. Seems a decent choice of place. The sidewalks are smooth, there are curb cuts, the stores are mostly accessible, there’s a decent amount to do, and there are a few hills to work the arms on as I’m slowly edging my way towards Angelina Jolie shoulders.

Which is the problem. Not the shoulders, the hills. I have gotten more unsolicited touching and potentially-dangerous-or-damaging “helping” then I thought possible, and while it happens all the time and my consent is apparently irrelevant to these people’s need to have some sort of do-gooder moment at my expense (someone actually ripped a cup out of my hand that I was placing in a trash can and tossed it in with a loud, satisfied “There!” and then waited to be thanked, my response was along the lines of “What just fucking happened?”), nowhere is this completely solipsistic behavior more in evidence than when the sidewalk begins to slope even ever so slightly towards the idea of becoming a hill.

Despite the invention, some time ago I believe, of a circular frame or disk arranged to revolve on an axis on vehicles or machinery (popularly known as the “wheel,”) people remain, apparently, very very daunted by hills. On my behalf. The situation is so dire, in fact, that it renders null and void any requirement for consent on my part to being touched, grabbed, or screamed at. Yeah, I’m being cute and sarcastically formal in the way I write this, and maybe it’s witty as hell or maybe it’s falling flat, but trust me this is the tone I take when I don’t even know what to do anymore. I’m at a loss. The things that have happened this week, all of which involve hills, have me this close to going back into the house permanently or starting to pack heat.

Nobody warned me. I knew people were asses, I knew that they’d talk to my husband instead of me if we were together*, I knew I’d hear jackassry such as “Oh, are we on an outing?” when I was at the pharmacy (response: “Actually, I’m trying to get my Adderall prescription and some lambskin condoms, latex sensitivity, thanks for asking, do they even make those anymore?”), but nobody told me that the hills would be the breaking point that finally proved to me that the rest of the world has gone utterly and completely batshit insane.

Here’s a brief summation of a few of the incidents I mean:

The farmer’s market: Not the first time this sort of thing happened, but the first time that the situation went beyond one in which I could continue to chirp “No thank you! No thank you!” and started letting the obscenities fly. You see, the Farmer’s Market I frequent and the ATM a block-and-a-half away are separated by… (cue the spooky music)… a HILL. OK, a pretty steep hill. It’s actually a hill that I practiced on a few times to make sure I was up to the hills on campus, before I took the chair out alone for the first time. It goes… up. On a grade. In one direction. As a hill does.

Halfway up I hear panting behind me. A fortyish woman who, let’s be frank, probably spends a good deal of her time praying to be in the sort of shape I’m in is laboriously clambering up behind me and, thinking she might need to pass, I pull aside and stop. Mildly annoying to stop on a steep grade, but no more so than having to hurry up on her behalf would be. When she catches up, I expect her to pass so that I can continue, but instead she stops and, proud as anything, beams “I came up here to help you!”

“Oh, thank you so much, that isn’t necessary,” I tell her.

“Oh, no, it’s fine, she says, and proceeds to dart out her hand and make a snatching sort of grab for the back of my chair. And right here is where I lose all sympathy for these people. It’s the grab. It’s not just that they’re touching without permission. Not just. It’s the fact that the grab is fast and the grab is furtive, because they know. They know they’re doing unwelcome shit. They just think they can get away with it.

I could really hold back a loud, startled “What are you doing?” and things devolved from there. She wouldn’t leave, just stood there, arms folded, yelling about how she was helping and I should be grateful and so on and so forth. Egh. Enough.

After she’d finally, finally gone away, I turned back up the hill again, sharing a shaking-our-heads-in-disbelief glance with my ten-year-old. Not two more feet up the hill it happened. Crack. The seat-back (which is extremely low) gets slammed into the small of my back, hard. Someone, a man this time, has apparently decided that he’s going to take over this going-up-the-hill thing for me and, not seeing any way to push the chair (because there isn’t one) has decided to grab the backrest and shove.


I was, at this point, beyond furious. Guy, as well, was livid at being challenged by the ought-to-be passive victim of his help. To quote Forster, “the man was young, the woman deeply stirred, in both a vein of coarseness was latent.” Anyone reading this blog knows there’s more than a vein of coarseness in this waif, and it ain’t all too latent–and my rescuer had quite the temper himself. Yelling. Screaming.

People. If you’re not certified to repair this chair, don’t put your hands on it unless you’re prepared to buy me a new one. Really. It’s bloody expensive and insurance covered none of it (but they’d cover a powerchair, which costs thousands more, how asinine is that?). Also, I sliced my own hand open (there’s apparently a reason this chair is named the Razorblade) and don’t really want to be liable for someone else’s misguided injury. Speaking of injury, I did call the police, and it is assault to grab someone’s chair, and the officer I spoke with said that it might even be possible to make a case for leaving-the-scene if you break something on the chair and then run off, refusing to give me your info. I wonder if I can charge it as a bias crime when they respond to the assault charge with “but she’s disabled!”

You can’t really predict what kind of quixotic, litigious lunatic is sitting in that chair you’re trying to grab, so why not try asking first? The ass you save may be your own.

On a much, much happier note, I’m hosting the disability blog carnival again! And, since last year’s carnival was almost a birth, I’m choosing to focus on the other side of the coin this year. Death! Death planning, spirituality, end-of-life issues, “right-to-die” legislation, and a look at some of the notably saddening losses the disability community has sustained in the past year. I have it on good authority that the next carnival is something like “fun in the sun,” so let’s all get good and goth with this one first, just to show we are many-layered and complex souls.

*the talking-to-my-husband-instead-of-me thing is amusing, but no more so than the people who will stand, purse their lips, tap their foot and glare at him for not “helping” me with everything from going over an itty bitty curb to opening my purse or somesuch. It’s really quite rude, and if they don’t stop we’re seriously considering putting on a whole show in which he berates me for not doing these things correctly (“It’s a little bitty curb cut! Jesus Christ, Hala!”) and I pretend to cry. Since obviously, the people want a show.

Today is the third day in the trial of Karen McCarron. I wrote about Katie a few months ago.  Her story hit me hard from the moment I first heard it, not helped by the fact that Katie looked an awful lot like I did at that age.  Like a lot of people, I’ve felt the anger well up in the back of my throat when I’ve heard some of the things Karen said about her daughter.  I’ve argued the point on forums and with friends that to use this tragedy as an example of how hard parenting a special-needs child can be is simply horrifying.   

So I really didn’t expect my reaction to the trial to be what it has been. 

I am finding myself very, very sad for Karen McCarron.  The more things I hear about the day she killed her daughter, the more the actual words of her confession are made public, the more I can’t seem to bring up anything more than a terrible pity.  She did a terrible, irrevocable thing, and she will no doubt never live anything remotely resembling a normal life again.   A fundamental belief I hold, which comes from Buddhism but contains within it the essence of what drew me to Christianity, is that the spiritual salvation of humanity is an “all or nothing” proposition.  There can be no peace or enlightenment for me, for you, or for anyone that does not include this woman.  It is not for me to choose.  Somehow it comes close to explaining why I hide in the house most of the time: at this moment I can feel the love that did not exist between Karen and her daughter like a terrible personal loss… as though something has been taken from me.  My barriers are really, really weak, which is something that having a baby will do to you, and I need to step back, take a little time away from the world.

This is not something I can really understand or express, but this evening, for the most part, I simply find myself wishing Karen McCarron a peace that I know she is unlikely to ever find.        For Katie and for Karen. 

<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.

Next Page »