Tourette

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

/ Wintersong / Leave a comment

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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How Not To Be An A**hole to Someone With Tourette Syndrome

/ Wintersong / 3 Comments

Dealing with difficult people is part and parcel with having significant Tourette Syndrome. While the overwhelming majority of people ignore my tics, or at least pretend to, there are always going to be people who, for one reason or another, feel the need to have some sort of interaction around them. To be completely clear, this does not automatically make someone a jerk. There are good reasons why someone might need to address the subject of my tics with me, but how this is approached has an enormous impact on my perception, and perhaps that of the other people present, with regards to whether or not you are an asshole.

For those of you who aren’t familiar with Tourette Syndrome (TS), 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 explanation to ensure that we’re all on the same page:

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 without a great deal of discernible 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, or the barking from whence my person website and blog take their names.

There are virtually no medications designed expressly for treating TS. There are a host of drugs that have anti-tic properties in addition to their original purpose, and for many Touretters medicine can reduce the severity and frequency of their symptoms. Relatively few people achieve full tic suppression through medication, and it is vitally important to strike a quality-of-life balance between the impact of the Tourette, and the impact of medication and side effects on one’s life. A very limited number of people have also had varying levels of success treating Tourette through the use of implanted electrodes in the brain, but the treatment is risky and relatively uncertain in outcome.

Nine out of ten people who choose to address the tics with me in public are jerks about it, saying things like “stop that,” “would you cut that out,” or my personal favorite: “can’t you see I’m on the phone.” Honestly, it’s a rare but awesome day when someone doesn’t assume that my neurological condition exists solely to screw up their day.

I’ve been astounded, especially as I’ve gotten older, by how many people continue to believe by default that a business traveler, fellow shopper, patient, etc, would make noises or twitch/squirm simply to annoy strangers around them. From my perspective, it comes across as rather  narcissistic to imagine a total stranger would want to put out that much effort on the off chance that they might piss you off. Leaving aside the issue of why they’d consider pissing you off to be a goal in the first place.

Although as a rule I believe that I owe it to other people, and particularly my fellow Touretters, to take the high road in interpersonal conflicts around my symptoms; when people have been especially confrontational or verbally abusive, I’ve been known to retort with something along the lines of “do you really think this is my idea of a good time?”

Fortunately there’s a relatively simple tweak that can help prevent escalation and confrontation, not to mention defensiveness on my part: rather than instructing someone who may have Tourette, or another involuntary condition to cease their behavior, instead ask if the behavior in question is within their control.

This sounds like a tiny detail, but in reality that simple change in language can help effect a change of thought pattern. You’re mentally taking the situation out of the realm of something that is only impacting yourlife, and acknowledging that it may be an even bigger burden on the person with whom you’re talking. From my perspective, asking if rather than telling me to instantly takes you from being a potential threat to being a potential ally, which probably won’t have any impact on whether I can control my symptoms, but it sure makes my day a whole lot better.

That’s probably the number one thing you can do to not be an asshole to someone with Tourette, but for those of you looking for a bit more guidance, I’ve put together a handy list of dos and don’ts:

Note: all these examples are drawn from personal experience

Don’t:

  • Yell at me to stop ticcing, particularly from a distance too far to make a conversational explanation plausible. Trust me, shouting “I have a neurological disorder” across a crowded store in response makes me feel bad, and you look bad.
  • Call me names – I’ve heard them all and they weren’t all that clever the first dozen times
  • Tell me how envious you are of me having Tourette because it seems so awesome. Even in my thirties I still get this frequently, and it’s pretty hard to get back out of the “asshole” box in my mind once you’ve said it to me.
  • Call security/try to have me removed from a public place
  • Hit me (yes, really)
  • Inform me that I’m being rude
  • Call my (not present) mother nasty names, my neurological condition has nothing to do with “not being raised right.” 
  • Mimic my tics back at me. I really thought this would end when I became an adult, but sadly no.
  • Speak to my companion(s) as if I wasn’t there. This is a problem for just about anyone with a visible disability.
  • Tell me that I’m bothering people. I promise, I know that, and already feel crappy and self conscious about it.

Do:

  • Approach/address me in a conversational tone of voice
  • Introduce yourself (especially if you’re in a position of authority)
  • Give us the chance to have a polite interaction – I can tolerate a certain amount of ignorance or confrontation if it’s civil from the start, and you’ll feel like less of an ass when you find out that I have a medical condition if you didn’t lead from a place of rudeness or aggression.
  • Acknowledge the tics from the outset, I know that they’re weird. Trying to work the conversation around to them circuitously comes across as duplicitous and smarmy (I’m looking at you TSA/airport security).
  • Unless the symptoms are incredible noticeable or intrusive, just ignore them. Having it pointed out that one’s behavior is outside the norm can make someone feel really self-conscious, even if it’s not done in a mean way.
  • And as I said before, ask me if my symptoms are controllable – “so I couldn’t help but notice that you’re barking, is that something you can control?”

I realize that as not only someone with Tourette, but someone with significantly noticeable symptoms, I’m a tiny minority among the people of the world. It’s not entirely reasonable to expect people to understand something completely out of their experience. But then, that’s why I thought this was an important post to write. One of the first questions I get asked when people find out I have Tourette, is how they should respond when they encounter someone in public who might have TS.

If you’re reading through this post thinking “well… duh,” just remember, everything I mentioned here is drawn from my own first-hand experience. We don’t always react to new situations the way we’d like to imagine we would.

Hiding to Stay Visible

/ Wintersong / 2 Comments

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.