Some sass about disability

Doom and gloom seems to be the recent theme, so here is some sass that I wrote for my latest post on the Mighty:

How do you feel about disabilities? Because I have one.

Whether seeking employment or a date, if you have an illness, condition, or disability, there’s always the question of when you should “disclose” this information, or if you should at all. A quick Google search of the topic will summon thousands of hits trying to decipher this new art form. Among these results are people asking for help. Should you do this during the interview? After you’re hired? Later down the line? When it becomes a problem? Or with dating, what’s the time frame? Is it a third date topic? After you’re committed? On the first date? That seems too risky…

Advice ranges from the super-enlightening, “if you think it could help,” to, “Don’t. It’s only caused problems for me,” to the instruction manual in another language: “Well, if X, Y, Z has happened and A, B, C could happen, then maybe…”

instagram

I think you get the picture.

The point is, we shouldn’t have to deal with this pressure (example of someone ignoring this pressure [and promoting democracy!!] seen in the instagram to your right. Caption is more important than the selfie). Weighing whether a potential partner or position will be worth losing if you volunteer this information, or constantly analyzing situations and people to determine if, when, and how we “confess” this information is ridiculous. Because that’s what it’s turned into, a confession. While the ADA (Americans with Disabilities Act) has brought positive change to multiple areas of life, there is still work to be done.

What has happened so far in my experience? Well, I’ve realized I’m not the only one feeling the pressure. I have seen panic (or at least some moderate anxiety) in the eyes of someone interviewing me if I go anywhere near “accommodations” or “chronic illness.” On at least four separate occasions I’ve been cut off, told hurriedly “that’s something you’ll have to talk to HR about” or “OK, that’s good, that’s all we need to know!” The subject is quickly changed, and as I rejoin the conversation, I observe the person (or persons) opposite me slowly relax after averting certain crisis. As of yet, I still haven’t disclosed I have narcolepsy with cataplexy in an interview because I haven’t had the opportunity.*

*Side note: As far as I can tell, there’s been no ADA violations because 1) I don’t push the subject, 2) I get where they’re coming from and 3) typically, I’ve either ended up with the position or there’s an unrelated reason as to why the position won’t work for the company or myself.

This is wrong. People with disabilities won’t disclose because they don’t want to be discriminated against, and I think some employers avoid the topic like the plague in an interview because of possible legal repercussions if they don’t end up hiring this person. To me, narcolepsy is just another fact. It’s not necessarily something I want in bold on my resume, but due to its good-day/bad-day fluctuation while I figure out which concoction of treatment best appeases my particular set of symptoms, I want you to know I have narcolepsy so there’s a plan already in place.

We need another perspective change. The most recent trend has been the idea that people with disabilities are these magical creatures of strength and resilience here for inspiration, the proof “it could always be worse!”

My disability is “invisible,” so my experience is limited here. Imagine though, being someone in a wheelchair, with an amputation, or someone with Down syndrome, and being told the following on a possibly regular basis:

1. “You are so brave.” (not included: – “for being here, in a wheelchair. How do you do it?”)
2. “It must be so terrible; I can’t imagine.” (not included: – “life without your arm. At least I don’t have to deal with that…”)
3. “She can do that?!” (not included: – “this completely normal task, since ya know, she’s got Down syndrome and I can’t address her myself.”)

It would get real old, real quick.

What do I want? To go into an interview and discuss my qualifications, experience, etc., etc., and when the interviewer asks me for a bit more about myself or if I have questions, I can say “Well, Mr. Supervisor, one thing I like to note is I have narcolepsy, which just means I typically ask for a little more flexible schedule to allow me a couple naps during the day and to go to medical appointments as needed. This worked well in my last position, and I’d like to know what the company’s experience accommodating employees with disabilities is and if accommodations could be put in place prior to any start dates.” The supervisor, completely at ease, would be able to tell me the company has hired people with disabilities in the past and has a few “standard” accommodation plans already in place but that they always have a conversation with new employees before their first day.

Pipe dream? Having a go at those with an implicit bias or stereotype, asking them flat out how they feel about disabilities before any of this disclosure took place, with an honest answer from them. I don’t look like someone who would have a disability, so I relish the opportunity to try and challenge perceptions, even if it doesn’t seem to work. I know I’ve got a better-than-average resume, and that’s not just “better than average for someone with a disability” – I worked my ass off for it, like anybody else. My secret? I sometimes have had to go about getting my experiences in different ways. This, right here, would be my point. If I can accomplish the same quality, why does it matter if my, or anyone else’s methods, are different from “normal”?

I’ve already experimented to see what would happen in a real-world situation, just not in an interview (yet). I decided to test out how a stranger would react to the knowledge of my disability in the most neutral, welcoming, and non-judgmental forum I could think of: Tinder.

I can see the eye-roll emojis and “that actually sounds like a terrible idea” thoughts. But… Surprise! It went well. Better than expected. On separate occasions, several months apart, I told roughly four or five of my matches I have narcolepsy. Caveat: this is not a line-opener. Just like an interview, it would be after we’d at least formed some type of conversation. This isn’t the most important thing in my life or in this situation, so it doesn’t get to be the first thing I talk about.

Now, back to the guys.

Whether it was a “fun fact about me? I’ve got narcolepsy!” “one thing you should know is I’ve got a chronic illness, it just makes life more interesting,” or the time I actually did say, “So how do you feel about disabilities? Because I have one haha,” I was met each time with genuine curiosity, questions, and respect for throwing it out there, and not once did I regret telling someone. That last one actually resulted in meeting the person and subsequently going on several dates, but even the ones I didn’t meet were consistently polite (shocker) and interested in learning at least a little bit more, so I consider this a success and promising for future research.

The lesson? Don’t let anyone tell you what you should or shouldn’t hide about yourself. If the situation is appropriate, ask more people how they feel about disabilities, honestly, and challenge (but don’t force) their thinking with how amazing you are. It’s true, right now you still typically need to be tactful with this information and you may have to hold back. However, the more brazen people there are who bring this into standard conversation, the more likely it will start to become standard conversation. And the asshats who continue to ignore these efforts or say “so sorry, it just isn’t a good fit” (and you know there’s more to it), are truly not worth all of the amazing things you have to offer. Don’t settle in any area of your life just “because you have one.”

Growth is yucky

I have about 10 different drafts that I’ve tried flushing out over the past month.

Each time, I come back to the confusion in my life. Have you ever had one of those moments where, as time slows down and pauses around you, you’re watching what’s happening instead of experiencing it? And as you’re watching yourself, you already know that the person before this moment, their book, is finished. Not just a chapter, because that would imply a continuation of the same story. Although maybe it is, you can’t really tell because it doesn’t feel like you’re the author at the moment. You just know this is important, for better and for worse.

And then you’re back in yourself, you walk out of the moment, and continue on. I feel like this would be an understandable experience to have when I was diagnosed with narcolepsy, but this is different.

Am I being dramatic? Probably. Maybe. No? When you realize there are large gaps in your memories, and you find yourself desperately trying to remember details that prove something, but come up blank… You’re confused.

Worse, you can’t place names, or even general references. You can’t research or ask others’ opinions, because nobody else was there. I started a blog for writing practice, for fun, and it’s given me the opportunity to be a contributor for The Mighty, which has been empowering and something I’ve enjoyed after the two articles I’ve submitted so far.

For the past month though, all of my energy has focused on this. People write vague things about their struggles on the internet all the time, whether alluding to it or calling it outright for what it is. I could imagine why people would do it before, but now I understand it. You just need something to be outside of your head and a notebook. I can’t write about anything else until I do this, annoying as it is, because I know how much I’ve changed recently. My perspectives are different, my trust is certainly being held close at the moment, and I’m hyper-vigilant to seemingly everything (hello exhausting). I’m in flux about my values, my goals, my identity (guess this is a premature quarter-life crisis), trying to piece together my past to better understand the present, and mostly avoiding the future right now.

But, here’s what I’ve learned so far…

  1. I am so, so much stronger than I have ever given myself credit for.
  2. I am incredibly intelligent (and have undermined this my whole life).
  3. My ways of adapting to my circumstances has resulted in some residual problems I now have to deal with, but I don’t regret what helped me cope.
  4. My life events are the same, but my experience for so many of these events is in question. I’m still me, but my perception of myself is unsettled and changing, and I’ve got to spend time with and learn who this new perception is.
  5. There are still some really damn amazing people in my life, and I’m more thankful for them than ever.

I’ve said it before and I’ll say it again; if you would have asked me if I thought a, b, c, or d would be in my future 1 year, 2 years, 5 or 10 years ago, I would have said “nah.” Here I am, and here I go. And it feels so good to write that.

On goals and narcolepsy

This will be short, I think. Originally, I was all gun-ho about this timeline I had in mind. Both for my life and this lil’ blog.

Go to college, ride for equestrian team, have sparkling GPA, get an undergrad degree, go to grad school, get a job, travel the world, make monies, buy a pony, buy a farm, etc. etc.

Start blog about horses. Write once a week, if not more frequently. Grow audience. Become competitive rider (says the blog I made in high school) and write about equestrian conquests with fabulous steeds. Make blog fancy with many followers as I advance my prowess.

Except per usual, plans and ideas go to hell in a hand basket and are definitely not what you thought they’d be. You’ve got to decide if this turn of events is something you’re going to beat yourself up over (NOT ACCOMPLISHING GOALS ON TIME OMG OMG OMG THIS IS NOT WHAT I PLANNED AHDGKHALKEHG) or if it’s something that will go more along the lines of “well… this is different. Definitely not what I was expecting… but okaaaay I’ma roll with it”

And so I roll.

I was not expecting to be rolling with narcolepsy four years ago, but there you have it. I haven’t spoken to anyone outside of friends and family about it (mostly because I have to explain what the hell is happening to those concerned), but seeing as I thought it’d be a great idea to do a show-and-tell presentation in one of my classes later this week, two weeks before finals, it looks like more people are going to be knowing about it anyways. It’s not that I’m hiding it, but truthfully I hate feeling weak and like I’m complicating things; naturally, narcolepsy is absolutely fantastic at accomplishing both of those. Sigh.

Although currently this blog is anonymous, so is it really like telling anyone if you happen to stumble upon this?

Anyways, this lil’ diagnosis has turned out to be a way bigger part of my life than I originally anticipated and so I adapt. I’m not planning on going to grad school for the time being (focusing on the more immediate task of seeing how my attempts at working a 40-hour week go first el oh el) and I’m neither on my school’s equestrian team nor taking lessons (another story entirely).

And I was going to write a horse blog three times a week. More chuckles.

So I decided writing once a month was more attainable. In true-to-form fashion, I’m writing this on the very last day of the month (goal still accomplished bitches – eh – me). I decided that horses could not be the only thing I write about, so I included my future career in recreation therapy to the mix. That wasn’t cutting it either, and I couldn’t come up with a new, witty, blog title encompassing recreation therapy (mouthful) and horses without losing the meaning, so I am begrudgingly accepting the attention whore that is narcolepsy.

Thus, rec (recreation therapy yay), sleep (narcolepsy…), ride (horses yay).

Writings, ramblings, and just keeping the mental gears moving with some eloquent exercise.

How it began…

It’s important for me to make this one of my first posts because horses have helped shape more than half of my life. In the words of M, “You know where we were at in our lives based on which barn we were (are) riding at.”

I didn’t know where that first ride was going to lead me.

I didn’t know just a week or two before that I had met one of my best friends. In all reality, I don’t remember a whole lot about this day. Had I known, maybe I wouldn’t have nearly fallen out of my chair in eagerness when the girl sitting next to me the first day of class asked if I’d like to go with her to her riding lesson.

Maybe I wouldn’t have, but if I’m being honest, I was already in deep by that point, and if it wasn’t then, I’m fairly certain it would have happened eventually.

Previous to this rendezvous, I had begun third grade and was now in the big elementary school. It was late August (none of this last week of July shit) during the first week of classes, and though it was debatable as to whether I was carrying a backpack or it was carrying me, I determinedly made my way to Miss B’s classroom and dropped myself front and center, ready for learning.

It’s a good thing I was ready for some learning, because I needed to make up for my baby alien endearingly-awkward-stunted looks. There’s a reason a girl, who 1) would later become one of my best friends and 2) wasn’t even in my class, therefore having little to no interaction with me, called me the weird gummyworm lady. I was rocking some serious goggle glasses that made my eyes look teensy due to the intense magnification needed for me find my way in the world (still basically blind as a bat without correction today, woohoo!), and I believe this was about the time that my infamous mullet was beginning to grow it’s ugly tail. While I don’t remember eating gummyworms frequently enough to warrant a nickname, it doesn’t entirely surprise me.

Lo and behold, however, on that first day (or at least during that first week), when another similarly spindly girl sat in the front row (literally against our teachers lecturing desk) next to me. I shyly looked over to say hi, and WHAT. I looked quickly back at whatever my 9 year old self was trying to appear busy with since I didn’t have an iPhone, and then glanced over again. Sure enough, she was wearing a shirt with a gorgeous dappled grey Andalusian on it, roses weaved into the mane and everything. Instead of a hi, I’m pretty sure I greeted this classmate with a “I really love your shirt. Do you like horses?” Derp derp.

Later we exchanged names, and M told me proudly that she was taking REAL RIDING LESSONS (!!!!), and then asked if I’d like to come along some time (!!!!!!!!!!!!!!!!!!!). I think it took a week or two before we got it coordinated, but I know that day I was about to bounce off the walls when M and her endearing mother came and picked me up. Despite the fact that it was overcast, us girls were giggling balls of sunshine in the backseat, and I was about on my knees trying to press my face against the window as we drove slowly up the drive towards the stable. Pastures lined either side and I couldn’t take in the variety of horse shapes, colors, and sizes fast enough. The barn itself seemed limitless; after my eyes adjusted the first thing I saw was the monstrous indoor which served as the center hub of the stable. On the side we entered was a row of stalls running the length of the barn, with a few on the other side of the arena along with an entrance to their tack shop, and yet another full length row which shared a back wall with the aisle we were currently walking. Though the structure was beginning to show it’s age slightly, having been constructed in the 70s hay-day, it was still clean and well taken care of with perky faces showing over the half-doors. We continued about halfway down and found M’s instructor, who she introduced to me as K, and who allowed me to help groom M’s trusty mount, Studly. Studly was your stereotypical lesson pony. Fat, grey coat faded to fleabitten white with age, and solid as a brick house. When the time came to tack Studly up, M disappeared into the tack room with K to get Studly’s things. I followed to the threshold and stood in amazement at the rows of saddles lining the walls, bits and bridles of every type hanging on countless hooks. There were groomboxes and saddle pads, girths and lungelines, boots, whips, extra stirrups, ointments and sprays that seemed to go on forever. With so much leather in one place, you couldn’t help wanting to smell it; maybe in reality it was a dusty 12′ x 12′ cluttered little room, but I remember it as a vast playground of well-oiled equipment organized just so.

When tacked up, our little train made it’s way to the outdoor arena. I sat up on the fence bench and watched in rapture as M walked and trotted around the arena, was able to turn Studly across the arena and change direction, make him halt and back up. I couldn’t get enough of it.

The real treat came at the end of the lesson however, when, as M was walking by us, instructor K asked me if I wanted to ride. Did I want to ride, ha ha. I quietly squealed with delight as someone handed me a helmet (adding this in because I hope I had a helmet, entirely probable I didn’t, and I actually don’t know if my mom had to sign a waiver for me either, but anyways), and then just had me slide from the fence over onto Studly’s back behind M. I held onto her while she explained that we were cooling Studly out after his “hard work” (combined, I don’t the two of us weighed 100 pounds), and for 5 blissful minutes I was riding. The air was crisp with oncoming fall as we trudged around, Studly dutifully carrying his babbling cargo with all the calmness, occasional stubbornness, and wisdom of an old-school lesson pony. I was taller than ever, on a real live horse, able to pet his fuzzy, speckled white hairs and feel the one-two-three-four of his hooves softly crunching the stone dust arena. Daydreams of galloping around in the expansive field immediately outside of the outdoor arena were dancing in my head. I don’t think I had ever been happier in my short life.

All too soon Studly was sufficiently cooled out, and we made our way back to the barn. I gushed that I would soon be signing up for lessons, and likely asked a million and one questions before we got back to the car, where M and I continued our serious evaluation of M’s lesson. I did get signed up for lessons later that fall, and I haven’t stopped talking about these damn creatures since.