Pet peeve: “It’s just asthma.”
Even though it’s a thing I say sometimes (usually to reassure people hovering over me in hopes it’ll get them to stop hovering and/or to reassure people giving me the stink eye that my very loud and scary-sounding cough isn’t contagious), I hate the sentiment when it comes from nonasthmatics. Particularly in the form of horizontal ableism from other chronic illness folk and/or from people in positions of authority.
Because the unspoken other half to that statement is typically, “… it’s not like you have a real chronic illness.”
And internalizing that sentiment has led me to do some very foolish things, like finish an exam before I went to the ER, or like finishing a very strenuous martial arts test with my lung function in the red, like not getting a flu shot when offered (long story), or like staying home from the ER because even though my PF was bottoming out at 180 when my PB is 680, it was “just asthma” and it wasn’t like it could kill me (uh, yeah, it could. Don’t do that, by the way. It’s a bad idea).
I am chronically ill. Asthma is a real chronic illness. And anyone who disagrees with me on that can trade my body for theirs so they can recover from the pulled muscles and bruised sternum and burst blood vessels I gave myself in a flare-up last week for me.
That is all.
Life with my chronic illness is not:
- A blue puffer and I’m fine
- Being unable to do anything physical
- Being able to do a spur-of-the-moment tirp
- Wearing perfume without worry
- Just laziness
- Or just anxiety
- At all like breathing through a straw
- Finding someone else’s perfume merely strong (my lungs wish it, though)
- Having pets
- Looking like this (link to image of a blond Caucasian boy of about 6-8, sucking on a blue puffer with atrocious inhaler technique)
- Or like this (link to image of a brunette Caucasian girl of about 4 or 5, sucking on a white puffer with atrocious inhaler technique)
- … Or seeing anyone even remotely resembling me in pamphlets or brochures about it (all asthmatics, apparently, are small children or senior citizens. Young adult asthmatics? We don’t exist, apparently).
Life with my chronic illness is:
- Feeling erased by “educational” resources.
- Knowing that as erased as I feel, it’s probably worse for Asian, First Nations, Hispanic, or black asthmatics, who likewise seem forgotten by most “educational” resources.
- Fearing insurance fuckups.
- Spending a quarter of my pay each month to keep myself breathing… and feeling fortunate I have good insurance so I only have to spend that much
- A special trip to the drug store the last day of my insurance coverage before I start a new position, to make sure I have enough meds to last until the insurance people get the paperwork sorted
- Solving the source of mystery exhaustion when I take my peak flow and realize, holy shit, my lungs are 40% blocked.
- Looking bored when I’m having a flareup (little-known symptom: Yawning).
- Looking sick when I’m having a flareup (cough-variant asthma: it exists)
- Having people yell at me for spreading illness in a public place when I’m having and trying to treat a flare-up (again, cough-variant asthma: it exists)
- Trying to explain to an ER doc between coughing fits that cough-variant asthma exists and that’s why I’m not wheezing
- Fearing when I get bad enough to go to the ER, because since I’m an athlete, my “Really sick” numbers are what is supposed to be my “Normal” – and I have yet to meet an ER doc who realizes that predicted bests are averages, outliers exist, and I’m one of them.
- Knowing that being young and female means that I have to do my best to act calm and unruffled, lest the doc write me off as anxious, even though anxiety when you can’t breathe is perfectly normal.
- Getting told I need more willpower when I’m treating my illness
- Feeling judged when someone remarks that they “don’t like” taking medicine when they see me treating my illness, and resisting the urge to snap back, “Yeah, like I do it for shits and giggles.”
- Having others presume me physically incompetent even on good days…
- … and then when I’ve finally convinced them I can do stuff on good days, judge me as lazy when a bad day means I can’t.
- Planning my budget around making sure I have enough for my medication and to treat any flare-ups.
- On bad months, playing “which bill can I not pay?” in favor of getting meds so I can stay healthy.
Somebody a few weeks ago was confused on the topic of ableism and expressing worry that if they ever helped someone with a disability, they’d be ableist. I’ll ignore the fact that and saying, “Well, now I can’t ever help and how’s that fair?” is a common tactic to support the status quo and assume the person was sincerely confused, as I’m sure there is a degree of sincere confusion thanks to the straw-effigy-making of the ableist assholes out there in the interwebs.
So, what ableist “help” does look like, from my experience:
- prohibiting me from lifting something because it might aggravate my asthma, heedless of my protestations that I can do it
- forcing your “help” on me because I have asthma and therefore am incompetent at physical stuff (few people say it in those words, but while I might not be great at subtext, I’m good enough to see that much)
- lecturing me about how I should be more grateful when I refuse your offer of help
- putting words in my mouth because you’re too impatient to hear me out when my stutter’s playing up (this is different from offering obvious words that are being difficult – if I’m having trouble with one particular word, by all means, substitute it. Don’t play 20 questions when I haven’t gotten past the first word of a sentence, though)
- my parents refusing to let me learn the skills to manage my own affairs and then using my lack of skill at organization and time management as an excuse to pressure me to remain dependent on them and thus under their control
- my parents trying to refuse me the right to adult freedom – including the freedom to make irresponsible choices – when I went to university because they felt I’d make bad decisions.
- someone telling me that I haven’t tried hard enough at something when I tell them their method of doing something doesn’t work for me.
What ableist “help” does not look like:
- any variation on, “Okay,” when your offer of help is refused
- a prof asking me what accommodations I need if I disclose to hir about asthma and my executive function issues
- someone offering a different way of doing the thing at hand when I tell them their method of doing something doesn’t work for me
- other relatives telling my parents that I’m a young adult and young adults have the right to make their own decisions, even if their parents don’t approve
- someone offering me help when I’m struggling with something on a bad asthma day and being willing to back off if I’m being stubborn about it, even if they know it’s a foolish decision that I’ll regret
- someone suggesting I should maybe take my inhaler because I sound awful because they know when I’m into something, I don’t notice my breathing until it’s very bad.
- someone at work offering to handle the social chit-chat when we go to a conference if I’ll take the public speaking because they’re terrified of it and they know it’s no biggie to me
General trend? Ableist stuff ignores my wants, needs, and rights and presumes that able people know better than I do what my capabilities are and what’s best for me. Non-ableist stuff is centered on my wants, needs and rights and presumes that I actually do know what I’m capable of and what is best for me. Furthermore, someone who’s not being ableist respects that I have the right to make bad decisions. Someone who is being ableist uses my disability and chronic illness as an excuse to try to “save” me from myself.
So, if you want to help without being ableist, focus on the person in question. Offer your help, and be willing to accept a no. Don’t be pushy. And even if a decision seems like a bad one to you, accept it because others have surely accepted your bad decisions even though they disapproved in your past. People have the right to make mistakes, and you don’t have the right to step in as a surrogate parent to another adult and “protect” them from their decisions. The exception to that, of course, being when the decision in question could seriously harm others – a person who’s been drinking should not have their decision to drive home be respected because that could kill someone, obviously. But if there’s little to no risk for collateral damage, respect that the other person is an adult who has the right to make mistakes.