Just

My beginning is like this: I was born a full three months before my expected arrival.

I apparently couldn’t wait the whole nine months to come into the world. This early arrival was rife with complications, however: a brain hemorrhage, one collapsed lung (I still have under-armpit scars from the surgery), and, the kicker — cerebral palsy as a result of premature birth. After they found the hemorrhage, the doctors did not expect me to survive.

The hemorrhage stopped on its own. No one could figure out why.

I was in the ICU for a long time after that — in a special plastic case to protect all three pounds of me from hospital elements.

My early birth was unexpected, as was my survival of the mysterious hemorrhage. Both of these things happened for no particular reason.

*

There are a lot of people who seem to subscribe to the “just-world” theory of events — that is, anyone who has anything bad happen to them has done something to “deserve” it. One sees this attitude thrown around quite a bit in relation to disability and illness — for the smoker who gets lung cancer, for some people who become severely disabled due to accidents, for the “angry” or “repressed” person who is diagnosed with a deadly illness. One sees it in so-called New Age “theories” of illness — that illness is a physical manifestation of bad karma or some other buzz-word often appropriated from a non-Western belief system.

But what of those who are “born this way”? What could they possibly have done in their “past lives” to have disability and/or illness be a feature of their current life? Could I have been, for example, a dictator or Bathory-esque ruler in a past life? I am not one for metaphysics, so I am inclined to think that the answer is no. Besides, were there definitive proof of past lives, it’s not as if every single New Age person could have been a saint in his/her/zie’s past life. So when these folks try to utilize my CP, or my depression, or my fibromyalgia as “proof” that I am or was a bad person and they are good people who inhabit a world of unicorns pooping glitter or somesuch, I tend to get a little upset and/or snarky at their pushing pseudo-enlightened rationales as making any sort of sense.

Disability is not proof of a “just world.” It is not a punishment, nor a tragedy for those of us who live with all sorts of disabilities, or whatever dichotomous thing that various social and cultural attitudes have constructed it as. It is one facet of human experience.

For many of us, disability just exists, or just happens. And for whatever reason, this terrifies many currently-abled people.

13 Comments

  1. Oh, wow. Thanks for this. I’ve had both my mom and my sister randomly “wonder” if my weight has anything to do with my having epilepsy. Apparently having my neurologist say “um, no, that doesn’t make any sense,” isn’t enough for them. I mean, I have epilepsy, I must have done *something* to deserve it. Blaming it on me being fat just makes it funnier.

  2. My parents wonder why I developed vulvodynia. There must be a reason, right? No.

    What the hell I don’t know what caused this – possibly nothing, for all I know. It just happened. It’s not my fault and it’s not my partner’s fault – that’s a big one, I keep running up against “Your partner must be terrible” ALL THE TIME.

    Nothing could have predicted this and there is no good reason for it. I wouldn’t wish this on someone else. If I try to play the blame game and pinpoint the exact action or series of action that caused this to happen, I’m going to be spending the rest of my life pondering it! I don’t have time to think about what happened or if I deserve this crap, just help me already!

  3. YES – this is annoying.

    A kind of cousin that I have encountered is the “it is God’s will” line of thinking. Which is a little more humane than blaming us for being the way we are, but still a little too… I don’t know, dramatic for my liking.

  4. Huh. If anyone’s punishing me for something I’ve done either in a past life or in this, they made a right half-arsed job of it. I’m not close to miserable.

  5. Xeginy – I feel you on that. Virtually every doctor I’ve had, my parents, and even total bloody strangers, have blamed every bad thing that’s happened in my body on being “too fat”. Yep, born at 4lbs 6oz with fluid on the brain, scoliosis, jaundice that would last for 3 weeks and respiratory issues – FAT BEBEH!

    Asthma at 4, eye problems, deafness from glue ear that was never totally resolved – FATTY FAT FAT KID.

    Etc. etc. I look back at pictures and weep. From 4+ I was the ‘fat kid’ in my head, I was ‘disgusting’ and ‘ugly’, self-harming at 6 (that went one for 20 years) and attempting suicide at 8 (lost count after that) because I was “Soooooo fat”

    I was a normal kid, not skinny, not fat, normal. I was taller than my peers, I started puberty at 8, but the initial doctor-sanctioned shaming gave (apparently) everyone on Earth a license to torment me about my weight. A bridge collapsing? That was because my 6 year old self had been driven over it in the family car HA HA. A ride-on steam train at a theme park derailing? Well obviously my 7 year old self was to blame (not y’know, one of the adult men sat near where the train actually decoupled). These ‘joeks’ are still dragged out now and I’m 32.

    Know what the worst thing was? Because I’ve essentially been ‘fat-policed’ since toddlerhood it took me until I was 30 to realise that my permanent neurological disabilities, my sight-loss, and the constant pain were *worse*, and more deserving of my tears, than the fact that I’m overweight due to having to restrict my level of physical activity.

    Also OP : TABs like to blame us because it’s a talisman for them to ward off the spectre of disability. “If I do X, Y and Z then i’ll be fit, and healthy and young-looking forever.” I’ve lost count of the number of times I’ve said something like “It was scary how quickly my life changed”, only to hear “Oh I’ll be ok, I look after myself.”

  6. Right on! My sister struggles with this all the time – her migraines are so debilitating that she must’ve been a genocidal dictator who put people on pikes for shits and giggles. Between the two of us, yeah, it’s kinda funny, but when we get it from outsiders, it’s just damned aggravating.

  7. I used to internalize a lot of this. Now, I see that bad luck happens and it’s the way you handle it that matters. I was aso born prematurely and I don’t want to blame anyone for that even though there are reasons I could. It’s a fact of life that I’m blind and autistic. Now deal with it.

  8. My varied illnesses are, according to my grandmother, because: I had amalgam fillings. I don’t take vitamins and drink protein shakes. I take prescription meds — she’s especially unfond of hormone replacement (I need to stop being trans* to be healthy) and psychiatric meds (they’re crutches ((a. hem.)) and I should just kick myself in the ass and get over it all already). I don’t exercise (what with a chronic pain condition and mobility impairments). I don’t have enough of a real (read: off-line) social life.

    I was not a healthy child. I got bronchitis several times each winter, pneumonia (which I was not expected to survive) on one memorable occasion, broken more bones than I care to remember (though I could tell you about most of them except I’ve forgotten the stories behind some of the toes and fingers). My grandparents took me to Hawaii when I was twelve because they thought I wouldn’t live a great deal longer. (I am capable of reading subtext given enough time and opportunity.) The trip had to be cut short because I couldn’t eat anything without throwing up violently. Why would anyone expect me to be a healthy adult?

  9. Yeah, one of the ‘rules’ I posted on my blog is that it’s not acceptable to say my disability happened for a reason. It didn’t. Disability just happens, and when it comes to the genetic lottery, I had a crappy ticket.

    ~Kali

  10. UGH, ALL OF THIS.

    I absolutely HATE “The Secret” and their followers. I have an extended family member who is really into that, and blames my migraines on “stress”, another family member’s cancer on “stress” and “negative energy”, and told someone who has celiac that it’s really just “wheat sensitivity” and she needs to eat a macrobiotic diet.

  11. Growing up, I think I had this feeling that somehow my stutter was there to “balance out” my being really good at school. That, you know, it wasn’t fair that I was good at maths and arts and English and history and so on (I think I also had some vague idea of privilege like being born in a first-world country to upper-middle class parents and this being unfair as well, but I was a kid and school seemed more immediate) so I got the stutter as a counterweight. I also didn’t really mind the stutter, so I felt I’d got the better out of that deal. Then depression happened and it felt as if the world had finally realised that the scales were tipped my way and decided to rectify that.

    It’s a very engrained idea, that disability can’t just *be*, that you have to have done something to deserve it! I can see it in a lot of the stereotypes about stuttering, to be honest – people with X negative trait (where X=cowardice, shyness, low self esteem, etc.) stutter, so you’re bringing it on yourself and if you stopped being X you’d stop stuttering. The idea that actually it’s simply chance, you happened to win the genetic and enviromental lottery and that’s it, seems to really frighten people. This despite the fact that if they’re older than six or so they don’t have to worry about ever developing the type I’ve got themselves.

  12. Yes, totally agree w/this blog and comments. I would add that my experience is that people do this, yes, a LOT about my/others’ disabilities/chronic illnesses, but that also it’s endemic in USA culture: “Everything happens for a reason,” or “You only get what you can handle,” or “You had to go through X in order to learn Y.” (Language of this sort seems less common from people I meet online from other countries.)

    When I got on the dog cancer lists, I heard all the same language applied to the owners and dogs as I’ve heard for 15 years about my disability! (“Have a positive attitude! It fights the dog’s cancer!” Even the dog cancer book and vets say this!)

    When Barbara Ehrenreich’s book came out about this in relation to getting breast cancer, I was amazed that she was being told the same thing as I was about my service dog.

    People apply it to themselves, too, not just others. It’s usually coming from a religious (God/Christianity/New Age/etc.) perspective, and a lot of the time they are trying to make themselves or others/me feel better with their belief system, so I just let it go by.

    Yes, everything does happen for a reason, but it’s not necessarily a GOOD reason. Like, the reason my dog got cancer was a combination of environmental, genetic, and other unknown REASONS, but that doesn’t mean it needed to happen.

  13. Sharon Waschsler – (“Have a positive attitude! It fights the dog’s cancer!” Even the dog cancer book and vets say this!) Double-you tee eff.

    I mean, they can pick up on our anxiety to an extent (don’t get worked up about the storm or they’ll take as permission to get worked up) but illnesses? When we fuss over our brats’ external injuries (limps that switch legs!) they ham it up. But even when they’re really hurt (bug bite), I can’t see how our attitude would help. Attitude doesn’t help humans fight cancer, is this like “pray for my sister, she has cancer” because the human doesn’t have it? Oy my head.

    I know the reasons I had thyroid problems – genetics, and most likely this nasty flu bug that had me laid out for a week – after that bug, the symptoms started. As for the current pain? Many possible reasons, but the most likely one is that you, yes you, have a voodoo doll and let your dog use it as a chew toy.

    And Storm – I do something similar. “Geez, Mom, could you stop stabbing me for like one second?” “I’m sorry, I can’t resist!” or “Mom, Mikey looked at me and now it hurts soooooo much.” Being immature is a fun way to deal with it.