This is another entry in a series of posts on the mental aspects of chronic illness (for me; I speak only for myself). The image above (which says “You’re not a burden. You’re a human.”) is available as a card from Emily McDowell.
We have this ideal, in American (western?) society, of a “low maintenance” person, and it feels to me like this ideal is placed especially heavily on women’s shoulders.* We should be easygoing, never complaining; and whatever is offered to us should always be enough, should be accepted with gratitude. We must never impose on others. Being properly low-maintenance seems to also require that, if one suffers, they do so in silence. (OK, that one is applied equally across genders, I think.)
It’s a little bit Puritan and a lot … whatever you call the school of thought that yearns for the “good old days” and just wants things to be simple and straightforward. (Never mind that the past was not as simple or as great as these nostalgic folks seem to believe.) Maybe it’s conservative? Or regional? But wherever it comes from, it suffused so many of my childhood teachings that it became a large part of my behavior and preconceptions of others’ behavior well into adulthood.
I think I’m having trouble describing it, because it was like water to a goldfish for me, for a long time. Parts of it probably still are, as I’ll describe below.
The thing I should make clear, at this point, is that anybody who has a disability of any kind is, kind of by definition, “high maintenance.” We have to do a lot of extra work (maintenance) to keep our bodies functioning. We sometimes (often? always?) need different affordances than people who don’t have disabilities, and if you think of able-bodied people as default, then it’s easy for you to think of our needs as impositions.
And the world around me has always thought of able-bodied people (and people without illnesses or dietary restrictions or allergies) as default. For a long time, I’m ashamed to admit, so did I.
In some ways, I still do it—I treat my disabilities as impositions, as something I should apologize for—it’s hard to leave a worldview entirely behind, right? I take an apologetic stance about everything from my inability to wear most shoes (not just high heels, but most flats and even many tennis shoes) to my lack of energy for attending every possible event I might be invited to. (Meetup.com, why do you not have a “maybe” option? Seriously.)
Although I’ve only recently come to think of it in these terms, avoiding being labeled “high maintenance,” or an imposition, due to a disability has been a life-long struggle for me, because I have really, really bad pet (cat, dog, rabbit) allergies—like, serious asthma attack bad. Countless times, I have apologized profusely to people when I couldn’t spend time at their houses, because their pets make me physically ill, or—this is how serious this social conditioning was—I have gone anyway and felt miserable and excused myself to another room when I needed to use my inhaler, so that I would seem like less trouble. I have felt—and many people have subtly made it clear that they agreed—that my disability** was my fault and an imposition on them. Even my current landlord, no joke, put the word “allergies” in scare-quotes in an email and acted like my spouse and I were trying to swindle her when we asked her to remove the pet-stained carpet in the house we’re renting, because it smelled like dogs and was full of dander and was making us sick. (She told us she would replace all the carpets before we moved in. We didn’t get that in writing, so everything is horrible.)
Maybe pet allergies are a special thing; pets are basically family members, and here I am telling people that I can’t be in their houses because of them. I’m sure that sounds a lot like blaming the pets, or not liking them, and I get how that could make someone angry. In reality, I love cats and dogs (and rabbits and birds and lizards and hedgehogs and pretty much all animals, really), but, I admit, not being able to spend time near certain animals is a real damper on my exuberance.
So let’s talk about food, instead of pets. Maybe that’s closer to universal. (I’ll get to arthritis in a bit.)
Maybe this is a weird example, but although I remember practically nothing about the movie “Twister,” all these years later, I still remember how my gut wrenched at this scene, because I was vegetarian at the time (against my family’s wishes) and because I fell for the (rather good) evocation of simplicity and of family and friends-who-grow-into-a-chosen-family and of home and of … just lots of good things that I felt I couldn’t be a part of, because I didn’t eat steak; the lady who raised her eyebrows at the steak was so clearly an outsider, in the scene, and that hurt.
The thing is, vegetarianism was, for me, a choice; since then, although I have gone back to eating meat, I have also developed quite a few food allergies and sensitivities, so I’m in the same boat for a different reason. I imagine that clip would have hurt worse, when I was a kid, if I’d had an allergy to one of those foods.
(I should say, I’m over it now. Happily, I am far less credulous than I was as a teenager. Honestly, it’s a weird thing for me to remember. I should also say, as far as I know, vegetarianism is not ever really a disability, though there are people with allergies to various meats. Still, although neither is a disability, I believe vegetarianism and veganism are things we should respect, in the interests of inclusion.)
For a more recent example, check out this cartoon. Now, I get that the goal of this is more to skewer liberal parenting, or something, than kids with food allergies. But imagine you are a kid with food allergies, and you see this. Or not even a kid; this one got my goat, and I’m fairly information literate and used to awful rhetoric. Imagine how much it would hurt to have your legitimate needs—”if I eat this and don’t get to a hospital in time it will probably kill me”—lumped in with clearly ridiculous demands like “gender-neutral candy” and “caramel-phobia.”
The cartoon artist should be ashamed: picking on people with food allergies, even just catching them in the spray of some other social commentary, is kind of punching down instead of up, and picking on children is [figuratively] punching literally down. Children with food allergies should be protected, never made fun of.
As far as the arthritis goes, my main feelings of imposition—and subsequent apologies—have mostly had to do with not having the energy to be social. Every now and then there’s awkwardness about not being able to sit on the ground. (To be clear, I actually can sit on the ground. But standing up from it, with an arthritic wrist and knees, can be a challenge, and some days I’m not willing to risk it.) I don’t think I’ve ever actually apologized for that, but sometimes I want to, like when I’m visiting with my little niece and nephew.
And then there are weird one-off things. Like, I had an interview, a while back, and a few days before it happened they sent me the schedule, which had two building tours on it; it didn’t occur to them to ask if I needed accommodation, so I ended up writing a kind of awkward email, asking if I could wear sneakers for the tours. I didn’t disclose a disability, just referred to the foot issue as “an injury” (which is true enough; 3 years ago, I injured it, and because of arthritis it never healed). They were super cool about it, but part of me wonders if that affected my chances at the job. (I didn’t get it. It’s OK. It wasn’t Pittsburgh-based, and I am glad I live here now.)
Or, I don’t know, I went to a corn maize with some friends and almost couldn’t climb the hay bale “steps” into the top of the barn, where there was a huge slide. (I’m glad I made it; it was fun!) I don’t remember if I apologized, but it was awkward, because I also don’t think they knew I had arthritis, at that point. So maybe they just thought I was very out of shape? Again, nobody was mean about it—we’re all still friends—but I felt awkward and misunderstood.
But that’s kind of what it always comes down to: lots of time I either have to disclose my disability, or else offer some alternative explanation for why I am falling outside of people’s expectations for “normalcy.” And with that explanation, by default, comes an apology, because I’m worried people will feel imposed upon. Even friends. Even family.
These attitudes that privilege those who have the luxury of being “low maintenance,” that treat disabilities and differences of any kind, including allergies, as impositions? They are incredibly harmful.
Please understand that there are people with chronic illnesses, disabilities, depression, allergies, autism, etc.—there are lots of people who might fall outside of your defaults.
There are too many examples of people treating others’ disabilities as inconveniences or added costs. (On that last link: I’m not slamming Nina for writing that very good post; I’m slamming the folks who ask the question she was answering.)
So perhaps when I say that I am apologetic when I shouldn’t be, that isn’t quite right. I am apologetic when I shouldn’t have to be, but when most of the implicit signals I receive, both day to day and in the moment, suggest that I should be. Still, it’s a habit I’m trying to break.
* Maybe it’s worse where I grew up, or in my family. Maybe other people don’t feel this as strongly as I do, and it’s blown out of proportion in my head? (up)
** The Americans with Disabilities Act includes allergies in its protections. If you have a library cat, or your office allows dogs other than service animals, maybe think about who you’re excluding. Legally, you can be asked to change that policy. Personally, as someone who is in danger if I go somewhere full of cat or dog dander, I am asking you. Please. (up)