I have some stock answers so that I don’t have to internalize comments that might otherwise make me feel guilty, weak, or vulnerable.
Welcome to Ask Ardra Anything, an advice column about life with multiple sclerosis from blogger Ardra Shephard. Ardra has lived with MS for 2 decades and is the creator of the award-winning blog Tripping on Air, as well as the host of AMI-tv’s new series, “Fashion Dis.” Got a question for Ardra? Reach out on Instagram @ms_trippingonair.
Ableist comments express the belief or attitude that nondisabled bodies are normal or better than disabled bodies. Ableist comments can range from subtle microaggressions — like the time I was told that eating potatoes would worsen my multiple sclerosis (MS) — to invasive questions from strangers wanting to know “what’s wrong” with me, to words that can only be categorized as slurs.
We are all exposed to various degrees of ableism all the time. Ableism has been the norm for so long that the term was only first used in the 1980s. It remains an ‘ism’ that many are unfamiliar with. It’s hard to fix a problem we don’t know exists. Whether you are disabled or not, speaking up when ableist comments occur can nudge the culture to change.
Still, responding to ableist comments can be challenging when the people making the remarks defend them as benign or even well-intended.
Offenders may claim they were just kidding or only trying to help. People think they’re being funny when they ask a wheelchair user if they have a license to drive it. Sometimes, people voice their own fears, like the time an older man saw me with my rollator and said, “I’m sure glad I don’t need one of those.”
I know all too well the feeling of figuring out the perfect response 4 hours after it would have been useful.
It can be hard to speak up when there’s pressure to personify the brave but cheerful disability stereotype, but taking ableism in stride is exhausting. Words matter, and observations about how my body moves through the world can hijack my mood, shift my focus to the negative, and make me feel misunderstood or othered, regardless of whether or not the comments were intended to be hurtful. Worse yet, ableist comments from friends and family can erode relationships.
Having lived with MS for 20-plus years means I’ve been on the receiving end of more ableist comments than I can count. I know all too well the feeling of figuring out the perfect response 4 hours after it would have been useful. The French even have a term for this phenomenon: “l’esprit d’escalier,” which translates to “staircase wit” and ironically feels like the only staircase I can actually climb.
In an effort to protect my well-being, I’ve cultivated an arsenal of stock responses to fit the category of comments I hear most often so that I can steer clear of the I-wish-I’d-said staircase.
Health advice can cross the line into ableist territory, particularly when it’s unsolicited. Bossy tips can oversimplify the complicated nature of MS or any chronic condition and can often feel more like judgment than concern. When someone who is not a doctor feels compelled to tell me that potatoes are bad for my MS, the implication is that MS is kind of my fault if I choose to indulge my starchy habit. It’s enraging to think that they don’t believe I would have traded chips for pretzels a long time ago if it were that simple. Of course, then I’d have to hear all about the dangers of gluten.
When someone comes at me with an ableist health tip, my go-to response is:
“MS is complicated. My doctor and I have a plan I’m comfortable with. (Please pass the chips.)”
During the years when my MS symptoms were primarily invisible or nonapparent, I was often asked about how I spent my days. I was told I didn’t look sick, which often felt more like an accusation than a compliment. On the flip side, once I started to need mobility aids, I began to be asked, “What happened?” and “Why are you using that?”
The obvious answer to “Why are you using a mobility aid?” is so that I can get from point A to point B. But the truth is, I don’t owe anyone an explanation.
We often prioritize the comfort of others so as not to appear rude, but it’s important to recognize who’s being rude in these situations.
As a professional oversharer with an openly-living-with-MS internet presence, I still have the right to deny nosy strangers answers to intimate questions. I control how, when, and with whom to share personal information — and it’s never to satisfy someone’s curiosity. Likewise, withholding personal data when sharing my health status might disadvantage me.
I wasn’t always this savvy. I used to answer these questions even if I later felt like I’d shared more than I was comfortable with. We often prioritize the comfort of others so as not to appear rude, but it’s important to recognize who’s being rude in these situations.
Setting boundaries doesn’t have to sound snarky. Now when someone asks me to explain myself, my go-to answers include:
More than once, a stranger interrupted my day to ask if they could pray for me. I’ve had ride-share drivers attempt to buckle my seat belt, and every now and then, someone puts their hands on my mobility aid in an attempt to help me. When people ask if they can pray for me, I feel pitied or judged as if my MS was the result of some kind of moral failure. When strangers try to guide my rollator as I navigate a ramp or step, not only is the interference infantilizing, but it can be destabilizing and can actually put me in danger.
I don’t enjoy being perceived as weak, vulnerable, or in need of saving when I’m just trying to grab an iced coffee and get on with my day. And while I can hear the cries of “they just wanted to help,” it’s amazing how quickly help turns to hostility when I decline to be someone’s good deed for the day.
When someone asks if they can pray for me, I say no, thanks. If they persist (they always persist), I say something along the lines of:
Language is always changing, and even terms that were once considered inclusive are being replaced with more equitable terminology. I bristle at the use of words like “handi-capable,” “special needs,” or “lame,” but I understand the learning curve. When it’s appropriate, I politely point out that “accessible parking pass” is a more contemporary term than “handicapped permit” or that “wheelchair user” is more accurate than “wheelchair-bound.”
Just last week, a woman I know only casually referred to me as “differently abled.” I politely told her that it was not only OK but preferable to use the term disabled. This woman had faced microaggressions based on her own identity, and we connected, learned from each other, and ended up having a great conversation!
Of course, you don’t owe anyone any teachable moments, but there’s a difference between outdated language and hateful language. Disability slurs should never be tolerated.
This is by no means an exhaustive list of ableist comments and behaviors. Ableism permeates the culture, and it’s important to remind myself not to take microaggressions personally. Progress is slow, but the world is becoming more inclusive. Increasingly, we are seeing more and better disability stories on television and social media, as well as in books and movies.
As the culture reimagines how we perceive disability, microaggressions, ableist comments, attitudes, and behaviors will start to change. In the meantime, having a handful of prepared answers allows me to respond to ableism on autopilot so that I don’t have to internalize the misinformed assumptions of others. Responding to ableist comments is about setting boundaries and acknowledging your worth.
Medically reviewed on June 30, 2023
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