Pregnancy1 is a blissfully neurology-stabilizing state for me. Not only do my moods stabilize (auto-comparatively…), but my migraines decrease significantly, both in severity and frequency. Which has been allowing me to take risks and perform tasks I usually don’t or can’t or am much more wary of — which in turn has me thinking about migraines and chronic illnesses and the social model of disability.
Note: whether or not migraines count as a disability per se may be up for debate (though I’d be more likely to say, are up to the individual migraineur’s2 situation and identity), but regardless, I’m going to use my experience with migraines here as illustrative of disability in general and an explanation of the social model of disability — both because I have at times in my life been disabled by migraines and because I cannot fully separate my bipolar disorder from my migraines3 (though one is more likely than the other to be recognized as a disability). The extent to which the following is translatable to any other experience of disability or chronic illness will vary, and I do not mean for it read as The One Truth About Disability. But I will say that in my talkings with others with disabilities and my readings of other disability activists, it shares enough similarities to be valuable as an illustration.
Even while pregnant, though, I am at risk of them: my migraine status at any given time (vulnerable? migraineous? active migraine? post-migraine hangover? low risk?) is always in my mind, and is always something I consider, however briefly, when planning my day.
That is not disabling.
My home, even in pregnancy, has differences from a non-migraineur’s home4, differences so ingrained I don’t even think about them the vast majority of the time: you will find here no scented products5, no striped or strongly contrasting color-schemes or curtains or clothes in our closets, no checkerboard tile patterns, no battery-operated noise-making or light-flashing toys, no energy-efficient prone-to-flicker long-bulb fluorescent lights6, no TV on in the background, no wood-burning fires (even if we had the fireplace), no slatted blinds (and very few window screens), no — for all people find this the hardest to believe — chocolate.
None of that is disabling.7
There are certain behaviors inside (and outside) my home that I engage in (or, more frequently, refrain from engaging in) because of my migraines: I rarely play video games anymore (sob!); there are many movie/TV scenes and some entire movies I do not watch, or do not watch unless very solidly in a Low Risk state (which I will likely move out of if I do watch said scenes); I don’t cross my eyes or spin around or watch others (even my child) move too rapidly in a repeated motion, such as jumping on a trampoline; I sleep as regularly as is possible with a child and a writing compulsion and a brain that often doesn’t cooperate; I don’t eat chocolate (or licorice or anise), even when available and offered and oh-so-tempting.
These are frequently annoying, but they are still not disabling.
When I have a migraine — a full-on, active migraine — I am incapacitated. I am in pain (to put it mildly), nothing in my brain works quite right, my word recall goes to shit, my cognition deteriorates (and not solely from the pain), my senses go hypersensitive and screwball (think apples that taste like sunscreen, voices that fall like hammers, scents that smell like pain, lights that I shy away from like a vampire from the sun), and I am more or less unable to do anything productive, enjoyable, or, well, anything except exist and wish I didn’t and wait for it to go away. These happen sometimes no matter how many precautions I take and reduction behaviors I engage in.
That is, in someways, disabling — but it’s also just my life, and my luck.
What is disabling, what disables me and limits my life in ways I do not find as easy to adapt to and integrate, is these:
cigarette smoke, both primary as I’m trying to get from my car to the store, and secondary as the chronic smoker walks by my restaurant table
perfume and cologne, dabbed or drenched on the person seated behind me on the bus
the laundry aisle at the supermarket — most days when non-pregnant, I can’t even walk down it without holding my breath (and sometimes, not even then)
the pattern in the carpet that seems to shift before me, that I have to walk over (eyes closed) for 10, 100, 500 feet to get to my destination
strobe lights in every dance hall, ever
bass lines so loud they can be felt without eardrums — in bars and trendy restaurants and the car driving by my house and played by the neighbours in our first apartment building
automated bathroom odor-maskers and hand soap whose scent lingers for hours, even after getting home and washing it off — twice
that one light in every classroom, every mall, every not-ridiculously-overpriced grocery store that’s on the fritz and flickers constantly
These are triggers I cannot control. These are triggers I risk exposure to if I wish to enter public at all, triggers that can make the difference between my accomplishing my goals in public for that day or not, can make the difference between being able to function again the following day or needing to hide in the dark quiet praying for death and/or sleep.
And no, I don’t expect every space to be entirely trigger-free, to look and sound and smell like my house. I would and have and will advocate for reasonable accommodations, including scent-free places, public smoking restrictions, sound limits, improved lighting, and so on, but it would be unreasonable for every possible trigger to be removed entirely from public spaces.8 The point is not that society must change in every conceivable way that would benefit me (though really, a few small changes is not too much to ask). Rather, the point is this: it is not until I step out of my home that my tendency toward migraines changes from something I deal with without much thought or bother to something that hinders my ability to go about my life.
That is when this part of me — my predisposition for migraines — becomes a disability. This disability is not inherent in my neurology, for all that my neurology not the same as the majority’s (and is frequently a pain and an impairment): no, the point it becomes a disability, that I am disabled, is at the intersection of my self and my society.
That is what I mean when I speak of the social model of disability — and why I’ll keep banging away at society’s role until ableism both individual and systemic is no longer the culturally accepted default.
- Or at least, both times I’ve been pregnant long enough to notice any effects. ↩
- Migraineur: one who gets migraines. ↩
- For three reasons, in increasing compellingness: there is a high overlap between people with mood disorders and people who get migraines, more so than either appear alone in the general population; the same drugs are often used to treat/prevent both; and, for me, stability in one part of my neurology goes along with stability in another — that is, when my moods are better, my migraines decrease. Whether or not it’s true in anyone else’s life, for me, the two are inextricable. ↩
- Though I will say that every migraineur is different, with a different set of triggers, and so what is true of my migraine-reduction needs may not be true of someone else’s. ↩
- No candles, no deodorizing sprays, no incense burners, no essential oil diffusers, no “aromatherapy” soaps or lotions or dryer sheets, and only unscented dish soaps, bath soaps, hands soaps, and laundry detergents; no shampoo at all, because it’s so impossible to find one that both doesn’t reek and does work (thank you baking soda and apple cider vinegar). ↩
- I do OK with some compact fluorescents, as long as they’re not the only light source in a room. ↩
- No, not even the lack of chocolate. ↩
- If nothing else, I have no desire to be the focus of a mob wielding broken ceramic mugs blaming me for the banishment of every chocolate cafe. ↩