If You Think PWDs Don’t Experience Mocking (and worse) Regularly, You Just Might Be Experiencing Ableist Privilege

Meryl Streep’s speech at the Golden Globes has reignited the perpetually-smoldering conversation about President-Elect Trump’s mockery of Serge Kovaleski, a Washington Post reporter with arthrogryposis, who had disagreed publicly with the then-candidate.

The most common refrain I hear on (my admittedly liberal) social media about the President-Elect’s shameful mimicry is some variation on:

I don’t understand how this wasn’t the end of [Trump’s candidacy]

It is a sentiment that speaks volumes about the privilege of the people expressing it.

For starters, the idea that these people are experiencing such a colossal failure of empathy that they believe mockery of people with disabilities is somehow an outre idea in American culture, really pisses me off. I have heard/seen this posted or brought up in conversation by people I admire, people I consider friends or family, and frankly people who have shaky ground under their feet if they are going to take Mr Trump to task for his behavior.

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The Problem With Projecting Our Experience Onto Others

Note: This essay was originally posted on The Bilerico Project on 3/11/13

After two tries with two significantly different meds, it looks like SSRIs and I simply don’t get along when it comes to being able to motivate and think well enough to get work done. As a person with moderate Obsessive Compulsive Disorder, this is rather aggravating. My OCD waxes and wanes much like my Tourette, and has been worse in the last few months than it had been for quite a while. In mentioning this conundrum to several people over the last couple of weeks, I’ve noticed something interesting, and new to my own experience.

When I have raised the topic of having OCD (a common comorbidity with Tourette), multiple people have reacted with total dismissal, typically saying something to the effect of “well everyone is a little OCD.”

In the past, while I might occasionally have had to explain what OCD was, the average person was far more likely to be accepting of its existence than they were of my Tourette Syndrome. Obsessive Compulsive Disorder being easier for many people to comprehend than the involuntary movements and sounds found in TS was often an annoyance to me, being someone who’s tics were often far more disruptive than the symptoms of OCD were.

This sort of dismissal isn’t an entirely unfamiliar phenomena to me though. As the profile of Tourette Syndrome was raised in the public consciousness, particularly in the wake of HBO’s well-made documentary on the topic of youth with the disorder, I found myself being met with a new form of disbelief when I attempted to explain my symptoms. One woman summed up the Catch 22 of having a suddenly high-profile condition, when she angrily responded to my explanation of why I was barking like a small terrier with “yeah I watch TV too; shut the fuck up.”

Perhaps with cultural artifacts like USA Network’s multiple-award-winning series Monk, a related phenomena has occurred with OCD. Of course, unlike with TS there is some truth to the statement that many people have transient obsessions or compulsions, which I imagine makes it easier to dismiss in other people.

In this one respect, the situation is not unlike some of the resistance LGBT people encounter from people who can relate just a little bit to our experiences. After all, homosexual experimentation has traditionally been a common element of childhood, even among people who grow up to identify as heterosexual. Besides, it isn’t that unusual to hear straight people ruminate on who they’d “go gay for” once they’ve got some alcohol in their system.

It hardly seems a great stretch to imagine that a person’s related, but distinctly different experience from being gay or bisexual, could contribute to the widespread and generally erroneous belief that sexual orientation is a “lifestyle choice.”

Perhaps in the back of some people’s minds when the topic of gay and bisexual people comes up, they think back to those late nights during sleepovers with Jim/Jane, or that one reoccurring dream they had in high school that made them feel so funny. Because we naturally project our own experiences onto other people, and they are heterosexual (regardless of their youthful exploration), the idea that gay people have “chosen” to pursue relationships and sex with people of the same gender, is to them a logical conclusion.

This can equally apply to gender identity. Half the people I know at some point or another has wondered or fantasized about being another gender. Personally I went through a period as a child where I really wished I had a vagina because I thought it’d be awesome to be the receptive parter for sex (I was beyond thrilled to learn a few years later that a vagina was not a strict requirement), and I know plenty of straight men who played dress-up as children, and straight women who were tomboys. Of course, none of that is the same as having a gender identity different from that which you were assigned at birth.

But again, I can see how someone who doesn’t, and doesn’t want to understand what it means to be trans*, could look to their own casual experience of questioning or playing with gender, and falsely extrapolate their experience in a way that leads them to believe that trans* people are simply “confused.”

It is not my intent to excuse people who project their own experiences onto us to justify their opposition to LGBT equality.

Rather, I simply believe that by striving to put our own experiences aside sometimes and try to understand where other people are coming from, we can be more compassionate people, better advocates for equality, and of course, avoid being that asshole from time to time.

Hiding to Stay Visible

After spending the past week in fabulous San Francisco CA, I’m winging my way across the Rocky Mountains returning to dreary Portland Maine.  The company I work for, Odyssey Events LLC, just hosted their first West Coast sex & BDSM conference, after a decade of only doing events in Maryland and DC. Making it all happen took months of hard work, but the event was a spectacular success, exceeding the expectations of everyone who had a hand in its planning, and execution.

In addition to being the event’s national talent coordinator, scheduling coordinator, and production assistant, I kept busy through the weekend: teaching three classes, co-leading opening ritual, and acting as a secondary event photographer. 

I should have had an awesome, if busy time, reveling in the realization of a difficult vision. But on top of all of those things, I also spent the entire event desperately working to suppress the symptoms of my Tourette Syndrome.

For those of you who aren’t familiar with the condition, or whose knowledge doesn’t extend past corpolalia (the relatively uncommon “swearing tics” that the media is so very fond of), allow me a brief moment to explain:

Tourette is a neurological condition that causes repeated involuntary movements and sounds, or “tics.” These can include sniffing, grunting, throat clearing, head jerking, facial grimacing, or just about anything else you can imagine. Both motor and vocal tics must be present (or have been within one year) for a diagnosis to be made, and the symptoms wax and wane over time without a great deal of rhyme or reason. Over time, new tics can develop and old tics can fade away. I have a host of symptoms, from the largely unnoticeable, such as painful dystonic back and neck tics, to more obvious tics like head jerking and the barking from whence my website and blog take their names.

Just as symptoms vary from person to person and moment to moment, so does a limited ability to suppress those tics for periods of time. The problem with suppressing is that it often takes a great deal of mental energy, making it difficult to maintain focus on other things. Suppressing like this also typically makes the tics far worse later, once someone has passed the limits of how much they can suppress, or are in a situation where they can stop doing so. In my case, I can manage my vocal tics for short periods of time, but doing so makes my painful back tics worse, tires me out faster, and means that I’m constantly devoting a considerable amount of focus and attention simply on the effort of not vocally ticcing.

Why then make the effort?  Put simply, I hate being invisible.

I often say, and only half in jest, that growing up with Tourette Syndrome taught me how to be a social entity. After all, I’ll point out, it’s hard to be a wallflower when you’re standing in the corner barking like a small terrier.

But in reality, particularly in sexually charged or queer environments, the rather noticeable consequences of my atypical neurological wiring has the effect of rendering me virtually invisible as a person possessed of sexual agency in the minds of the people around me.

This is hardly unique to my experience as a Touretter of course. Many people who present outwardly as having a disability find that they are automatically classified as a non-sexual being in the minds of those around them and even those whom they interact with on a regular basis.  Nor is this phenomena remotely confined to the rather specialized world of kink and BDSM events.

Among gay and queer men, my condition is often seen simply as a burden too far out there to be bothered with as a prospective partner. There is a regrettable stigma in being LGBT in our culture, and in part out of that stigma has grown the pursuit of a nebulous idea of “perfection” in our sexual and romantic partners. As if to say “yes I’m in a same-gender relationship, but wouldn’t you be too if you could have him/her/hir on your arm?”

Equally significant though, the media engines of Gay Inc. have worked hard to present an image of what it means to be LGB(t) in America: attractive, upper middle class, white, monogamous, and most importantly, “normal.” Even if I ticked all those boxes save the last, which I don’t, being perceived as “normal” hasn’t been on the table for me since my tics became significantly noticeable nineteen years ago.

It’s tempting I know, to say that I’m not giving people credit, that given a chance, many people would be happy to engage with me as a sexual and romantic entity despite the Tourette. We want to believe that faced with this sort of situation we’d be guided by our better angels and look past something as simple as some barking or twitching.

But we don’t, and while that’s sad, it’s also very human. As “proof” I can offer this utterly unscientific experiment I ran over the course of a couple of years:

When I remove any mention of the Tourette from my online dating profiles, without making any other fundamental changes, I get responses to messages I send out, and get unsolicited messages in my inbox with some regularity. Put the Tourette back, and the well goes abruptly dry. It doesn’t really matter how vague or specific I get, or even if I take pains to note that I don’t have coprolalia. If I’m out about the Tourette, I get nowhere.

Nor does the strategy of getting to know someone over the web and building a connection before disclosing my condition prove remotely viable. Once the TS is out in the open, potential play or romantic partners disengage to seek out partners whose neurotransmitters fire in a more conventional way.

While rejection always sucks, I vastly prefer the passive rejection of an unreturned note or a note never sent, over building a connection with someone only to have them turn tail and run when they find out about the Tourette. This is why after much experimentation, I settled on leaving the disclosure in place in my social media and dating-site profiles.

As an aside, I’ve found in talking to many of the trans* people in my life that there are some clear parallels to be drawn between my own experience as a Touretter and the trans* experience, especially but not exclusively as it relates to dating and sexual agency. While as a rule most of the trans* people in my life reject the idea of trans* identity as a “medical condition,” and I certainly wouldn’t call being trans* a “disability, one could likely replace “Tourette” and “TS” in the preceding couple of paragraphs with “trans* history/identity” and have a painfully familiar storyline to many people.

Despite all the issues inherent in being seen as a Touretter, suppressing my tics at Surrender was hardly a rousing success as a strategy. With part of my attention perpetually diverted to managing the tics, I found it hard to fully engage with the people around me, and I know that I was a bit off my game during opening ritual and my urethral sounding class if nothing else.

On a related note, while I’ve achieved a satisfying level of professional success in my field, although I certainly have goals and dreams as-yet-unrealized, I have doubts as to whether I could I have gotten where I am now, had my entry into this world not coincided with a combination of a strong waning phase and a couple of years where my primary tics were not as socially intrusive as the barking (which has been an on-again/off-again companion for nearly nineteen years). After all, as I’ve discussed before, my much of my work is fundamentally related to sex work.

But beneath all the issues of dating and career opportunities, closets are not, and have never been places where I feel comfortable. When I did consider pursuing play at Surrender, or even just a deeper intellectual/emotional connection with someone, I found myself hyper conscious of the fact that I was not presenting them with my authentic self.

Speaking only for myself, Tourette Syndrome is part of my fundamental makeup, and without its overarching influence, my life would surely look radically different than it does today. It’s not hyperbole to say that there’s no way to really know me without understanding the TS and how it has and continues to effect who I am and how I move through my life.

I’d love to say that I’m going to resolve to be more open and positive about the Tourette, or that I won’t repeat this exact same pattern come Dark Odyssey Winter Fire in February. But the reality is that I honestly don’t know.

That’s the Siren’s song of the closet after all.