Are You Guilty Of The Wrong Attitude About MS?
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| Side eye, or lazy eye? |
Managing multiple sclerosis means accepting that some days are easier than others, and then not freaking out when you have a bad one, like the one I had last week. I couldn’t pin my extra MS’yness on my usual trifecta of bad-day triggers; it wasn’t due to lack of sleep, I wasn’t fighting an infection, and I didn’t have a hangover. I couldn’t even blame the solar system because Mercury is no longer in retrograde.
Whatever random MS factor that was messing with me that day meant my walking was a bit stiffer, my legs a bit weaker, my breath a bit shorter.
No biggie; I’m used to it. I knew I could manage, and was desperate for some end of summer maintenance – one last pedicure before the cold hits and I stop shaving my legs or making any effort really; I’m basically a Never-Nude come winter.
And so I put my MS’y day out of mind and Uber’d to the closest nail-bar without worrying about the fact that those huge, unnecessarily-high pedicure chairs don’t give a shit about MS’y days. I was on a mission, and as my mom always says the price of beauty is pain.
Once I got to the spa, I made my slow-walk to the back where the magic happens. I abandoned my rollator because I needed my arms to lift my legs up the step (that was deep enough to be two steps) to the pedicure chair – all while trying not to show my underwear to curious onlookers.
I could feel the eyes of the women in the spa, holding their lattes and their collective breaths, watching as I shimmied, limb by limb, into my seat, wondering if I would fall, or collapse, or I don’t know, spontaneously combust?
I could feel the eyes of the women in the spa, holding their lattes and their collective breaths, watching as I shimmied, limb by limb, into my seat, wondering if I would fall, or collapse, or I don’t know, spontaneously combust?
Whenever this kind of voyeurism happens (because it happens a lot), I find myself wanting to say something cutting, something that lets everyone know I see you looking. But of course, I never do. I’m trying hard not to succumb to the stereotype of Bitter Disabled Person.
As I settled into my seat, I had an uneasy sense of what was about to happen. As if the staring wasn’t enough, I felt a full-on micro-aggression approaching. And sure enough,
each and every one of those bitches cheered.
Like I was a toddler taking her first steps, instead of a grown woman who just needed her callouses shaved and maybe a toe wax.
If you’ve only heard the term micro-aggression and are wondering what the actual fuck, here’s the deal: Micro-aggressions are the off-hand comments or actions that cut-down marginalized persons without even trying. They call attention to someone in a way that highlights what makes them different. What makes them Other.
Micro-aggressions are disses disguised as compliments.
Like how cheering for something that isn’t actually an accomplishment can make the heroine of this story (moi) feel not celebrated, but pitied; maybe even a little out of place, like I don’t belong to this latte-sipping Lululemon crowd.
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| I just wanna drink my PSL like every other basic bitch. |
Okay, but those “bitches” were cheering for you. Obvi they didn’t wanna kick you out of their club. Can’t you just chill?
For the record, I did chill. I understand that micro-aggressions are not the same as ableism which is way worse (and a topic for another day). Those yoga moms got a pass because I KNOW they didn’t mean to offend. But, these kinds of mini-slags happen all the time. What went down at the nail-bar wasn’t the worst micro-aggression I’ve experienced, only the most recent.
Although, come to think of it, another day last week, as I was approaching the elevator, some guy in the lobby, eight feet behind me, rushed over like a wannabe super-hero to push the button.
As I was reaching for it.
(I use a rollator for balance, so I can see how he might assume my index finger might not work.) Before moving on he gave my back three pats and a sympathetic rub while I willed my head not to explode.
Having done his good deed for the day, this grown-up boy-scout got to leave our encounter feeling good about himself. Meanwhile, the normally cool, confident, true heroine of this story (moi) went from minding my own business, day dreaming about sweater-dresses, to brooding about how often the outside world sees me as helpless and pitiable.
Someone else’s good deed.
When it comes to chronic illnesses like multiple sclerosis, micro-aggression comes in many forms. It’s that hint of disbelief when someone says But you look so good! It’s telling someone You’re Too Young To Be In a Wheelchair. It’s assuming a person with a disability can’t speak for themselves. It’s talking louder or slower, or using a baby voice. It’s pushing a belief that a poor diet is the cause of disease and that kale is the cure. It’s the horrified stranger who asks What happened to you? It’s turning partners into heroes, and patients into inspiration porn. It’s the sad smiles and the slow head-shakes and the looks that say
I don’t know how you haven’t killed yourself yet.
Okay, clearly you think I’m a douche who should just stay home, and avoid all interaction with strangers.
Relax. You’re being dramatic, and I know you mean well. But staying home is a terrible idea. Your home is where your wifi lives and generalizations love anonymity.
Micro-aggressions are the cost of connecting with people who have lived different lives than our own. We don’t see enough real diversity in media, especially when it comes to sickness, so when we see it IRL, we draw from what we’ve learned from Forrest Gump or Frankenstein and the effed up biases we don’t even know we have.
Micro-aggressions are the cost of connecting with people who have lived different lives than our own. We don’t see enough real diversity in media, especially when it comes to sickness, so when we see it IRL, we draw from what we’ve learned from Forrest Gump or Frankenstein and the effed up biases we don’t even know we have.
The truth is, we’re all guilty of micro-aggressions. Most of us don’t go around trying to be dicks, but we all have some degree of implicit bias. We can’t help it. If you don’t believe me, take an online test like the one that revealed I believe dog people are better than cat people, but that cat people are still better than people who take their socks off on planes.
The best way for us to minimize our weirdness isn’t to avoid difference but to embrace it. Exposure to diversity is what normalizes it. And while I will never want to be exposed to your gross feet, I can make an effort to look past the endless pictures of your stupid cat and consider that maybe you aren’t lonely, or crazy, or a witch.
What I want all the concerned rando’s I encounter to know is that, it’s not sympathy I’m after. It’s not pats on the back or applause. If you really want to express your concern, then advocate for accessible transit, hire someone with a disability, be fucking outraged that most bars and restaurants in Toronto are still not accessible. Demand better content and more diverse stories from the culture-makers – the kinds of stories that might give us all a healthier, less stereotypical perspective on people who are different from us.
And if all that’s too much, then just be normal. We all deserve to be here.
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So true- I find myself stewing after someone at work has rushed to hold the door open for me when I have my stick, even when I'm halfway through. I keep having to force myself to smile and say thanks as I know they mean well!
We're all just trying to be nice to those around us. Sorry it offends you.
Ha! Totally. This happens even with the automatic doors to my building that are in no danger of closing before I get through. People put their hands out to 'hold' them open. It's so weird.
I humbly accept your apology.
I see most of it as kindness. I would love to be offered help from generous strangers and cheered on for something that is obviously difficult for me. I have found now MS has put me in a wheelchair, I am invisible. People don't bother to visit & when I do got out most ignore me and will even step in front of my chair and block my path. I do hear you on the pity thing though. I find it too hard to bear in my local community, everyone looks and stares and hopes I don't go the same way my Dad did from this hideous illness��
Yes, I totally agree that people are trying to be kind. And some people, like yourself, are comfortable receiving this kind of attention to their struggles. My story is about those of us who aren't.
I think what you describe about feeling ignored and/or pitied by your community are more examples of these very micro-aggressions that affect everyone with a disability.
Thanks for commenting, and be well.
I want to take the online test re: cat people, etc.. But I digress.
As a relatively recent inductee into the world of mobility aids (arthritis), I am getting used to people offering their seats on the TTC, which is super nice. One time, I had to turn down a young man's offer because it was just the kind of seat that is most uncomfortable for me, at which point a woman across the way inquired whether hers was more suitable, which it was, so I accepted & she ended up sitting in the young man's seat. Sometimes I accept the offer of a seat even when it might be more comfortable for me to stand.
All this by way of saying I'm still on a learning curve from this side of mobility & your blog always gives me food for thought.
Also, I'm pretty sure cat people are superior.
I’ve never heard the term & absolutely love being able fo put a name for it. I laughed out loud reading this as I can picture every scene. I can’t believe they cheered. I admire your restraint as I would be bitter disabled stereotype for sure. Lainie
There really is no handbook for navigating this whole mobility aid thing. I'm still on the learning curve too.
And yes, cat people are superior – to the bare-foot plane people and like, murderers. Probably.
Thanks for reading and for commenting!
Thanks Lainie. I'm trying out the whole 'pen is mightier than the sword' approach. For now.
Reminds me of my first outing with a rollator. Heading to the bathroom (of course!), struggling physically for every step and emotionally with the ramifications of the situation. Some guy 30 years older than me cruising by the other way patted me on the shoulder and said, "Good job!" P is for patronizing. Then there was the time I got onto an elevator with said rollator – Passenger: "Good for you!" Me (feeling uncharacteristically snarky): "I used to do triathlons." Them: looking embarrassed. (As they should have. And I did do a triathlon. Once. In college. A mini trI. But still…) Great blog, by the way.
My theory is that people are feeling awkward about what they're seeing and that their reactions are an unconscious attempt to defray the awkwardness by feeling connected or living up to some vision of themselves. Then again, my DH tells me that Marshall Crenshaw wrote the song "Cynical Girl" for me. Or maybe I'm just a BDP. 😉
I feel like there are certain people who can't just observe something and say nothing. And if I'm being honest, I think I am one of them. Or at least I was. I'm trying harder to keep my big mouth shut these days.
Thanks for commenting Kristin and for your kind words about the blog!
In the beginning I liked kindness and now it sticks in my craw. I getcha.
It's nice to be understood! Thanks for writing that great post, Ardra!
Ahem…I. Can. Hear. You.
Signed,
The Cat Lady
I think you're right and I think we all do it until we know better.
What is BDP? I thought I was up to date on cool things kids say but I can't crack this one.
Thanks for reading. I like your handle SS. 🙂
Thanks for reading!
Of course I didn't mean you, Beth. I would never mess with "The" Cat Lady, head of all cat ladies…
Bitter Disabled Person
-Edith
Love this post and it rings true for me (I'm in my 30s and use a manual chair).
I do recon though that micro aggression is on the spectrum of ableism. I had a friend tell me the disability/race test and its interesting…
(As in, swap all words "disability/disabled" with aboriginal/minority group)
"Is it ok for 3 (white) woman to stare at a woman in a beauty parlour and the way she moves, and then congratulate her for doing something do routinely?"
I routinely get congratulated for just getting up out of bet in the morning, making it out of the house and remembering my own name. Great Expectations.
-Edith
Gah! *facepalm*
All good points. Thanks Edith.
I was on a TTC streetcar standing next to a young woman. I gave her my best lecherous old man look. She offered me her seat. I had mixed feelings. I stopped the lecherous look. I wondered whether I looked old. Or whether she somehow knew I had MS. How did she know that I had MS?
Joe, I don't know if you've looked at the news lately, but now is not the time to be throwing around lecherous old man looks. Also, you may feel like an old man, but you don't look like one. She definitely did not know you have MS and almost certainly moved because you creeped her out. I'm telling you this because I love you…try using your words next time. The polite ones, not the creeper ones. xa
I was feeling breezy and sturdy in my AFOs and waltzed into a store, hoping to score a cute shirt. A woman came up to me and said, I noticed you have trouble walking, I’m a healer and I’d be happy to lay hands on you and pray. I said NO THANKS I’M GOOD and left shortly after, deflated and feeling exposed as damaged goods and I may have cried in my car. Wish I would have had something zingier to say, like I’m praying you don’t ruin someone else’s day.
This is enraging. I’m so sorry you had to hear this.
Like the old bastard in the the bar commented to his friend and loud enough that I heard..after seeing me walk in..”that’s me when I’m leaving the bar??” REALLY..like WHY??
Ugh. Fuck that guy. What a dick.