Is Disability Virtue Signalling Really A Problem?

Disability virtue signalling?

One day, back in the before times, I was on my way to get my monthly MS blood-work done, and as I slowly rollatored my way to the entrance of the lab, I heard the thumping of feet running on pavement behind me. As I reached for the automatic door opener, a woman dove in front of me at the last second, and, with all her body weight, slammed against the big round button. I wanted to say “Seriously?”, but she was so damned pleased with herself that I felt compelled to dismiss her virtue signalling, and sweetly thank her for literally saving my life. 

I wish I could say that was the only time someone hurled themself in front of an elevator to swoop in and push the button, as if they were taking a bullet for me. I wish I could tell you that the last time someone tried to tie my shoelace was when I was 4. I wish I could tell you that only once has an Uber driver attempted to buckle my seat-belt. I’m not sure what it is about my slow walk that suggests my arms don’t work (they do), but it’s not like these do-gooders have taken the time to think about what I might actually need. Because all of this peacockery isn’t so much to help me, it’s to show me that they care; that they want to help; that they’re one of the good guys. And how can I be mad at that? We need people that care.

And, I’m not mad at it. Well, not exactly. But I’m something.

Because what this behaviour amounts to is Virtue Signalling. And we all do it. All the time. (Okay, maybe not everyone. If you’re one of those man-spreaders on the subway who pretends not to notice that someone needs your seat, this post isn’t for you. Go back to your cave.)

Probably misses his cave.

Virtue Signalling:  a conspicuous but basically useless action or good deed that shows off how awesome you are. Gross, because who wants to be someone else’s good deed. 

As much as I’ve come to recognize virtue signalling for what it is, it’s also something I’m totally guilty of. (Guys, I just told you we all do it.)

Here are some excruciating examples of my own virtue signalling. 

  • Recently, in Mexico, my face hurt from smiling and saying ‘gracias’ so much, because I needed the resort staff to know I don’t think they’re all murderous rapists (but like, where can I score some cocaine?). 
  • I gushed my congratulations when I was reintroduced to Claire, my neighborhood cheese-monger, formerly known as Hugh.
  • Back when burkas were a federal-election issue, I considered wearing a head-scarf when my Muslim girlfriend was being continually harassed. 
  • I always over-tip our housekeeper and pointedly ask about her son by name, which is a big fucking deal, because I have family members whose names I can’t remember (Is it Sidney or Sydney? I DON’T KNOW). 

I cringe writing all of this. I would way rather confess to peeing my pants at the mall than admit to any of this way more embarrassing behaviour, but here we are.

Just kidding about the cocaine, guys. Don’t do cocaine.

I did all of these trashy ass things because on some level I wanted people to know I’m an ally. I’m on your side. I support diversity, and religious freedom and LGBTQ communities. Just like that misguided COVID celebrity sing-a-long, the last thing I wanted was to inadvertently condescend to anyone who doesn’t enjoy the privileges I do. Like Will Ferrell’s confusing af performance of Imagine, I tried! 

Also like Will Ferrell, I haven’t showered or brushed my hair in a minute.

My heart was in the right place. Right? 

Sure. But who cares? Virtue signalling is basically showing off, and nobody likes a show-off, Kanye. But it’s hard to call out virtue signalling because it seems harmless, and intentions matter; and, in all of these examples the intentions were good. There is, however, a reason we should care about this kind of virtue signalling. 

When these less-than-helpful kindnesses happen to me, I realize they don’t make me feel better or supported. They just make me feel different. And never in a good way. Just as I’m sure all the people I gave a misguided fist-bump of support to, more likely felt othered than included. 

Yes, these are teeny tiny slights. The price we pay to live in a society where we’re all still figuring out how to process our differences. But these kinds of microaggressions are like mosquito bites. If you only get one a year, you’re not going to dwell on it, let alone get malaria. But if you get mosquito bites every time you leave the house, you might start flailing your arms in defence anytime someone new gets near you.

Virtue signalling isn’t about the causes we support. It’s about our own egos and identities. Telling people we’re on their side in these useless ways, doesn’t actually do anything to affect change (#iamcharlie but I can’t remember why). But, just because you’re virtue signalling doesn’t mean you don’t care. In fact, you probably do care (terrorism = bad, satire = good).

Most people, I think, are decent, but with so many causes that deserve our attention, it’s hard to care about the ones that don’t directly affect us. It can take all our resources just to look out for ourselves and the people we love. The path to being a true ally involves getting to know someone who’s different, either IRL, or through quality story-telling. 

Whether it’s directed toward persons with MS, some other disability, or any other  marginalized person or group, virtue signalling is basically about being weird. The good news is that most of us have got each other’s backs. We’re getting better at this whole being human thing. . It’s about knowing better and doing better.

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Stupid Sh*t People Say

One day, when I was in high school, I was riding the city bus when a friend I hadn’t seen since grade school got on. We were both 15 and to my surprise, she was eight months pregnant. When I saw her I gasped, “Michelle! How did this happen?” She rolled her eyes and muttered something about the ignorance of virgins and made her way to the back of the bus. 

Even at 15 I had enough going on to regret the words I’d said as soon as they’d left my big stupid mouth. Years later, I still cringe when I think about it. We all say bone-headed things and I’ve found my own foot in my mouth many times since then. I try to remember this when someone barfs out something mind boggling to me and I tell myself they agonize over their most idiotic declarations as much as I distress over mine.

As someone with an often misunderstood illness, I hear stupid shit with astounding regularity. I’ve learned not to take most of it personally, but sometimes these off the cuff, seemingly innocuous comments can be reflections of questionable beliefs that are deeply imbedded in our society. 

As luck would have it, I’ve been on the receiving end of some of these questionable comments over the last couple of days. In response, I’ve been using my well trained side-eye a little more than usual and so rather than risk pulling a muscle in my face, I’ve decided to call a few things out here. 

My first raised eyebrow was directed towards some classic Dime-Store Philosophy, when a casual acquaintance lamented to me that ‘everything happens for a reason.’

I didn’t bother mentioning that I don’t believe my disease was sent to me for the greater good of teaching me some mystical lesson. I simply glanced at my cane and shrugged, saying I don’t really subscribe to that way of thinking. My philosopher friend then doubled down and said if not for some reason, then karma. Oh? 

Please tell me more about the ancient spiritual principles of Buddhism (you WASPy hipster.)

Since I am a lady and sarcasm is unbecoming, what I actually said was an exceedingly polite and sincere “Karma? Interesting. I wonder what the fuck I did?” My politeness notwithstanding, things wrapped up pretty quickly after that. I get it that lots of people think this way. I may have even believed some of these easy ideologies myself before gaining a little life experience. To each his own. But here’s a bit of free sensitivity training: Don’t say this shit out loud. I mean, know the room. There is tragedy in this world. Assigning a reason to someone else’s suffering is just, ew.

Seriously. Just don’t.

My adventures with verbal faux pas continued into the next day when The Banker and I headed to the baseball game. The good people at The Roger’s Centre have a service where those requiring assistance can be met at the gate with a wheelchair and brought to their seats. I decided to take advantage of this in the interest of saving myself from a long walk, stairs, and crowds that can be hostile to my slow gait, and blind to my inability to defend myself against the shoving and jostling that happens in a moving throng of people. These employees are well trained and do a great job. It’s a lovely service and without it I might otherwise have stayed home. 

When we arrived at our section, we were met by another employee whose job it was to direct people to their seats. This attendant did not seem to have received quite the same kind of training as the disability services team. When she saw me rolling up in a wheelchair, she called out loudly:

“Well, aren’t you lucky!” 

Her high pitched, sing-song voice was something usually reserved for speaking to people under the age of seven but it’s a phenomenon that sometimes happens to adults when being spoken to while seated. Strikes one and two and the game hadn’t even started.

The words were ringing in my ears and this wasn’t even the first time I’d heard something like this. Here’s why I’m throwing shade at it. What she said was so obviously wrong, but it’s not what you’re thinking. Okay. It totally is what you’re thinking. In our lazy as hell society, why would I want to walk when someone else can do it for me? I mean, who wouldn’t want that, right? (I heard it. Turns out I’m not much of a lady.)

It’s also this. When someone says ‘Aren’t you lucky?’, it implies that I’m the recipient of some over and above special treatment. Like I’ve won a damn prize. While everyone else at the game deserves to be there, I’m only lucky enough to be there because of the benevolence and generosity of someone else. Yes, it is a great service and I’m happy it exists but it should not be considered a charity and to tell me I ought to feel lucky to have what amounts to the same access as everyone else is diminishing and insulting and not at all what I’m sure the stadium intended. It’s a service that is provided because it’s the right thing to do. It’s the ethical way to run a business. I don’t feel lucky that I’m invited to participate in something like a baseball game. I feel like a valued and equal member of society.

I know there are many places in the world where people with disabilities are not treated with the same regard I was afforded at the Jays’ game. Hell, there are many places in Toronto where that is the case. I appreciate that I’m fortunate to live in a country where progress is being made in terms of how we treat our most vulnerable but it’s comments like ‘aren’t you lucky’ that are indicative of an endemic, misguided attitude towards disability. One that says, You don’t belong here quite as much as the rest of us. And furthermore, We don’t have to include you, but if we do you’d better recognize how magnanimous and charitable we are. I don’t want to sound like some angry cane wagger but this attitude needs to change. Equal access isn’t a benevolent kindness. Under the Ontario Human Rights Code, it’s the law, bitches.

Okay, true confessions time. What’s the stupidest thing someone has said to you? You can only answer if you’re willing to cough up something boneheaded you’ve said. Guys, our heads are made of bone. It’s bound to happen so get it off your chest already.

In the mean time, I’m gonna pour myself a glass of wine and think about the time I complained to a colleague about the incompetence of the guest lecturer we were forced to endure. A guest lecturer who turned out to be my colleague’s mother. Natch.

The Frustrating Truth About MS Awareness Month

March is Multiple Sclerosis Awareness Month and you don’t have to tell me twice. Oh, I’m well aware of Multiple Sclerosis. MS screams in my face all day long and then wakes me up at night. 

And thank God it’s almost April, because I’m so sick of seeing orange ribbons everywhere and hearing about MS from every news outlet. 

Oh wait. I mean the opposite of that. 

Sit down. It’s about to get rant-y in here.

Unless we’re talking about a package from Hermès, my favourite colour is decidedly not orange, but as the official colour of MS Awareness Month it’s lack of visibility is actually a little troubling, because we need considerably more awareness. MS is poorly understood, grossly underfunded, and affects a staggering amount of people. 

When we do hear about MS the message is confusing. Even within the MS community we can’t agree on what that message should be. There is significant controversy about how this disease is portrayed in the media, and in drug company ads. The overwhelming majority of what we see are glossy images of young and healthy people doing athletic things, smiling and happy. The kinds of pictures that entice us to try new medications. They’re the pictures of what we all hope to be. They serve to soothe and comfort the public that the number one neurological disease affecting young people worldwide is manageable. They promise good health with a simple pill, maybe a teeny injection. These images are well received by many patients for whom this ideal is even remotely possible, and can be especially comforting to the newly diagnosed who are looking to see what their lives might come to look like.

I totally get this.

When I was diagnosed I read everything I could. It was terrifying. I attended a support group and wanted to throw up the minute I walked in and saw people who looked sick. I never went back. I hated the MS Walk because I couldn’t bear to see people in wheelchairs. Instead of compassion, my own fear was reflected back at me. I felt panicked over my future. Seeing the effects of MS was more than I could handle. These were not my people. I was in my early twenties, dating and pursuing a career. I wanted to see the people who looked like me; the people who were doing well, the people who could reassure me my life wasn’t falling apart. I remember someone pointing out a woman in her 40’s who walked with a cane. I was told “She’s had MS forever and she only needs a cane”. Only? I swore I would never become that sick. As someone newly diagnosed, I wanted to protect myself from the scariest stories; the more images of people with MS pursuing ‘normal’ lives, the better.

At the other end of the controversy are those that are angry at the  ‘normal life’ depiction of MS. Who feel outraged that the dancing, rock climbing, happy, ice-cream eaters are not a true representation of what MS actually looks like. After 15 years of MS, I get this too. I know it’s tragically laughable to promise yourself you will never become so disabled as to need assistance walking, and yet I still hear others make this promise to themselves all the time. I also know how hurtful and utterly douchey it is to say this out loud. For clearly the implication is there are those who simply didn’t try hard enough to keep from progressing. I understand why people are pissed to see this Pollyanna presentation of the disease that looks like a lie for so many and that leaves their experience with it completely ignored and invalidated.

The message about MS is murky because the disease itself is murky. It presents dramatically differently from person to person. Even within the same person from year to year. My own disease looks nothing like the disease I had ten years ago. My story is different now and so is the information I need, want and can handle. As patients we can’t agree on one simple narrative because there isn’t just one. What we all have in common is an uncertain future and a need for more action, for the best minds of medicine and science to attack this head on. Yes, many live a long time without much progression. Tell those stories. 

But tell the other stories too. 

Because as comforting as the best case scenario may seem, there is real danger if we only tell that story. When we sugar-coat the potential of MS we end up in a society under the false impression that MS is under control; that we’ve got it figured out, and shouldn’t we move on to the next thing? We end up in a world where people ask “Why don’t you just take that drug I saw on tv? Doesn’t that fix it?”, or “Didn’t we cure that with stem cells last week?” 

The truth is MS is most definitely not under control. Even if these drugs benefit some, they are only capable of impacting a fraction of MS cases. We’ve spent billions developing new therapies to modify disease – why are so few research projects looking at determining the underlying cause? Because the drugs we have are simply not enough. None provide a cure, and none address the underlying cause. They are wildly expensive and have plenty of serious side effects.

Educating is not about spreading negativity. It’s not about fear mongering. It’s certainly not about failing to celebrate all the wonderful things people with MS on any spectrum of the disease can and do accomplish. But let’s nor forget, MS is a brutal diseaseThere are no guaranteed outcomes but we must give voice to all possible outcomes. We cannot, and we must not, ignore those who embody our worst fears. People with more progressive MS are being erased from the conversation. When we fail to raise any alarms about MS we fail to mobilize the necessary resources to do the research and the work that so desperately needs to be done. It’s in everyone’s best interest to get this thing cured no matter how well you think you’re doing. 
In the MS narrative the story about how you can live a full life with MS already seems to be getting its fair share of attention and that’s good. There’s an important place for that. But we need to tell the whole story. The number of people living with MS is shocking. In Canada alone rates are as high as 1 in 1000 to 1 in 500 in some places. Orange is indeed the colour of MS Awareness. It’s also the colour of warning. We need to sound the alarm. It’s time to tell the whole story.

End rant. 

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