“Bring on The Monsters”: Reflections on Turning 25

For the last few weeks–okay, months–I’ve been pretty consumed with a musical. And no, it isn’t Hamilton or Dear Evan Hansen, even though, admittedly, I did go through “brief” periods of intense immersion into both shows. It’s The Lightning Thief, based on the Rick Riordan middle grade novel of the same name, that tells the tale of 12 year old demigod Percy Jackson and his quest to retrieve Zeus’ lightning bolt. You can check out the show here and here; and, good news–it’s going on tour in 2018!

Still, to be fair, I’ve been a fan of Percy Jackson, and Rick Riordan’s books, for a long time now. So it’s not really surprising that I have become LT Musical trash. It’s an extension of the PJO trash I already am. (See the Urban Dictionary definition of trash).

But what surprises me about this show is its juxtaposition of family-oriented fun with deep, not-always-so-family-oriented themes. “The Tree on the Hill” is a great example of this. However, the last two songs in the show–”The Last Day of Summer” and “Bring on The Monsters”–are perhaps the most adept at getting to the heart of Riordan’s work, which asks its audience to reconsider what it asks of a hero, specifically a child hero, in the archetypal hero’s quest.

I mean, would you entrust a twelve year old kid to save all of existence? And if you were that kid, how would you feel about saving a world, people, and immortal beings who really don’t care about you that much?

In the “Last Day of Summer”, Percy sings:

What do you do when the quest has ended?

What do you do when the battle’s won?

So many questions left unanswered

So many things still left undone

What do you do

When it’s up to you to choose:

Has something ended or begun?

Stay or go? Pick one

Where do you go when it’s over?

What do you do when you’ve come to

The last day of summer?

I don’t think I would’ve asked those questions at age 12, but in the LT Musical, Percy does. And now, at 25, so am I. Where do you go when it’s over? What do you do when you’ve come to the last day of summer?

In reflecting on turning 25, I have to talk about this past summer, and how, for a while, every sunny day felt like the last day of summer–a soft sadness that cast a pall on my new endeavors and made me question my painfully rebuilt sense of self.

As many of you know, my two years in Kansas were extremely difficult for me. For most of my time there, I was depressed and just not healthy physically, mentally, or otherwise. But in the Spring of 2017, I began to find myself again. I did it with the help of friends in Kansas (Erin Poppe, Trent McGee, Marissa Germann, Emily Gliserman, and Jordan Sutton) and friends from home and/or IU (Keely Doyle, Jennifer Smith, and Mike Horky, especially), and of course, my family. Twitter was also important for me in getting back to my “usual self,” as I previously wrote about here.  Before long, I was looking forward to the prospect of graduation and vacationing in “the Happiest Place on Earth” with my little brother.

And so, as graduation drew nearer, and my long-awaited trip ceased to become just a dream, I found myself thinking: so this is how it feels to be happy again. My return to a decent level of happiness was followed by a return to an acceptable level of healthiness, in large part to rest, relaxation, and a greater variation in my diet. Apparently, pizza doesn’t contain all the health benefits of the entire Food Pyramid…who knew?

Yet, I wasn’t really healthy, and I’m still not. In June, I was officially diagnosed with Crohn’s disease.

The diagnosis explained some of the gory symptoms I’d been having over the past year and a half, and the not so gory symptoms–like constant fatigue–that still remained even after I returned home. Initially, there was comfort in knowing what was “wrong” with me. But as the summer wore on, and our government repeatedly tried to repeal and replace the Affordable Care Act, whatever comfort I had in this diagnosis vanished, leaving only fear and a sense of destabilization in my carefully reconstructed self behind.

I described this ordeal earlier as creating “a soft sadness” that colored all the positive things I had going for me: I was returning to IU, I had found a place to live, I had even gotten a part-time job at my old residence hall. Maybe that description is inaccurate, because I wasn’t really sad, even though, it sure felt like it. I was confused. Confused as to how this chronic illness fit in with my Cerebral Palsy; confused as to what it meant in long-term medical costs; and yes, a little confused as to what it meant when it came to romantic relationships. And perhaps confused is even the wrong word to use here, as what this boiled down to was the fact that I found it difficult, if not impossible, to reframe my identity to include Crohn’s.

Because disability has always been a part of my life, this diagnosis felt alien and all-encompassing to me. I kept asking myself questions like, “Will I now primarily identify as chronically ill?”, “Will I have to?”, and, “How will I afford my body in the future?”  

What do you do when it’s over? What do you do when you’ve come to the last day of summer?

These questions are important because I have spent the majority of the last three years cultivating my sense of self with regard to my status as a disabled man. I have spent that time also cultivating my sense of self with regard to my status as a bisexual man. In Kansas, I saw both of those identities questioned and ostracized at various points.

I am still spending my time rebuilding those parts of myself post-Kansas. This task was not made easier by my Crohn’s diagnosis.

I’ll admit that I felt scared for my future for the first time in my life.

But as time has passed, and I am reflecting on a another year gone by, I recognize that Crohn’s isn’t all encompassing. I’m still disabled–just another, additional, category of disabled. And like Cerebral Palsy before it, Crohn’s hasn’t stopped me from living my life. Sure, I‘ve had to make some changes in my lifestyle, like drinking way more water and cutting back on pizza (that one was hard), but I still get to go out and hang with friends, attend concerts, and Netflix “The West Wing” for the fourth time.

The real, oppressive, barriers that will inevitably occur will be societal and social ones. I cannot discount the very tangible fears I have about my health going forward, as I come off my parent’s health insurance next year and enter a society that, truthfully, hates sick people. And I don’t have the power to change people’s minds about dating disabled or chronically ill folk.

But this thought brings me back to Percy Jackson and the LT Musical. “Bring on the Monsters,” the last song of the show, is an ode to realizing that life is going to be tough, but that we must rise up to meet it. The chorus of the song goes like this:

Bring on the monsters

Bring on the monsters

Bring on the real world

Bring on the monsters

Bring on the monsters

Bring on the real world

It is worth noting that what the kids are singing here gets at a really adult theme through the comparison of “monsters” to “the real world”: both are seen as equally dangerous, and as equally necessary to fight back against. In the last refrain of the song, in which Percy repeatedly communicates the fact that he is, in fact, leaving Camp Half-Blood for the “real world”, he even states that, “I’ll be back next summer/ You’ll see me again/ I’ll be back next summer/ I’ll survive till then”.  He actively chooses to reenter the “real world” even though it is just as dangerous, if not more, than the mythical world of monsters and gods that he becomes an integral part of.

It is in this same vein that I’m viewing turning 25. I say, “Bring on the monsters/ Bring on the real world”. These days, it is very hard to tell them apart.

Crohn’s will be a monster. The government will be a monster. Relationships will be a monster. But bring them on.

23, and 24, were very trying years. 25 will be no different, I am sure, but I am finally ready to stay vigilant and work to make 25 a great year not only for me, but also for those who have supported me throughout my life; and, more importantly, for those who continue to get left behind by society and culture.

Before signing off, I do want to state that I had some great moments as a 24 year old. I saw Hamilton, not once, but twice. I went to Disney with my brother. I taught a collegiate class and I graduated with my Master’s degree. I got accepted into a PhD program. I learned to cook chicken cutlets. I started work on a novel. I made new friends–online and IRL–and explored new parts of myself. I allowed my parents to engage with me more fully about the issues I care about.

I may have been scared and unprepared to take on monsters, and the real world, at 24.

I can guarantee you that will change, starting today.  

 

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The Screen Where it Happens: Social Media, Disability, and Community

My lived experience as a disabled, bisexual, Jewish man hasn’t always given me feelings of pride and purpose. But through social media, I am able to educate peers, colleagues, and family members on disability rights issues and connect with other disabled individuals.

This article appeared in ModelViewCulture.com’s Quarterly No. 4 (December 2016)

I’m a millennial: I spend a lot of time on the Internet. I’ll admit that I mostly use the Internet to watch Netflix and YouTube, as well as keep up with various social media platforms. But I also read a lot online; everything from funny lists on Buzzfeed to scholarly articles published in my favorite research journals. However, in the past year or so, I have tried to make a more concerted effort to be aware of current events and politics. One of the ways that I have been doing that is through reading The New York Times.

This year, The Times has taken a strong interest in giving a voice to disabled people like myself; Rosemarie Garland-Thomson (RGT), a pioneer in the field of Disability Studies, kicked off The Times’ weekly Opinion series focused on disability with an article entitled: “Becoming Disabled.” (If you have not yet read it–go do it and then read everything RGT has written). Having previously read RGT’s work, I was thrilled to see her voice being brought to the forefront of such an influential publication. But more strikingly, I was overwhelmed with my reaction to the piece.

I have written before on my experiences as a disabled person living and working at educational institutions both at the undergraduate and graduate level. RGT’s article goes beyond those experiences for me, encapsulating much of my lived experience as a disabled person. Yet, what stood out to me most in the article was the last line of her piece: “Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.”

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At the 2015 Disability Studies Conference (Courtesy Photo)

I read that line and then was thrown into an existential crisis of sorts: Do I belong to a greater disability community? I thought about that for awhile, spending time on Youtube repeatedly watching Ben Platt, of Pitch Perfect and Book of Mormon fame, perform “Waving Through a Window” from the soon-to-be Broadway musical Dear Evan Hansen. According to the show’s Facebook page: “All his life, Evan Hansen has felt invisible. But when a tragedy thrusts him into the center of a rapidly evolving controversy, he is given the opportunity of a lifetime: the chance to be somebody else.” Justin Paul, one of the writers of the music and lyrics, explains in a Youtube video that “Waving through a Window” was an exercise in discovering Evan’s sound–“the sound of loneliness”:

“On the outside always looking in/

Will I ever be more than I’ve always been?/

’cause I’m tap, tap, tapping on the glass/

I’m waving through a window/

I try to speak, but nobody can hear/

So I wait around for an answer to appear/

While I’m watch, watch, watching people pass/

I’m waving through a window/

Oh, can anybody see, is anybody waving/

Back at me?”

The song lyrics reached me: having a disability is isolating and lonely, especially in academia. I have few opportunities to engage with other disabled folks, and the able-bodied folks I do engage with rarely understand why I feel isolated. My experiences as a disabled person are often explained away, met with indifference, or otherwise ignored by the greater able-bodied population that I interact with on a day-to-day basis. I have nowhere to go and meet with other disabled students, no way to unpack and unload the things that I find isolating about being a disabled person on a campus that lacks access in multiple ways.

Unlike Evan, I have a pretty good idea about who is–and who isn’t–”waving back at me”. Thus, at least locally, and immediately speaking, I do not belong to a greater disability community: getting accommodation services isn’t the same thing as having a community to belong to. (Which for some reason, is an issue that many higher education and medical stakeholders just don’t seem to get.) But if I go back to that quote from RGT’s article, I see that I am part of a greater disability community: it’s just (mostly) online.

Social media has been invaluable to me in that regard–Twitter especially, but also sites like Facebook and other blogs and forums for disabled scholars, leaders, and other people. In connecting through social media, we are breaking–if for a moment–many of the other social barriers that exist in our lives as a result of being disabled.

So much has been written in the past ten years about technology bringing about a culture in which we lack connection, but I feel the opposite is true, especially when it comes to my experiences with the online disability community. My IRL experiences with other disabled folk are few outside of a hospital setting, so even the simple act of being able to follow other disabled people on Twitter is an act of connection that is wildly empowering. Thus, I follow a lot of disabled individuals on social media because it makes me feel like other people are not only “waving back at me,” but also breaking through the glass that separates us to unpack and unload the issues that the community is grappling with via hashtags, DMs, Facebook posts, and other avenues.

Such participation on social media has led me to discover many wonderful people, all whom have wonderful, powerful, and revolutionary ideas. If you aren’t familiar with the #CriptheVote campaign—started by prominent disability activists Gregg Beratan, Alice Wong, and Andrew Pulrang—you should check it out; this non-partisan Twitter campaign seeks to encourage dialogue amongst disabled and able-bodied people alike (such as our presidential candidates) on policy directly related to the issues that disabled people face in their daily lives. The campaign has put a spotlight on disability rights issues in this election that has not been seen before, which is maybe why I hadn’t thought of myself as a disabled voter until now. The ideas presented through #CriptheVote have made me think harder about my status as a person with a disability and how I would like the political process to recognize that status.

#CriptheVote—and other movements like it, such as the DisVisibility project—are an example of what the influential developmental psychologist Urie Brofenbrenner might deem the community interacting with the macro and/or chronosystems that influence our understanding of disability and its related issues. But on a more personal level, my “microsystem”, to once again use Brofenbrenner’s language, has been happily infiltrated by some of the people I mentioned above and some other folks I have yet to mention. I met, in person, Gregg Beratan at a conference this summer. And earlier this year, I was delighted to receive a DM on Twitter from Emily Ladau, a disability activist that I follow on Twitter because of her great blog “Words I Wheel By,” and the amazing pieces she writes for the Huffington Post and Salon, among other outlets; it turns out my earlier work for Model View Culture resonated with her, which for me was like the equivalent of Lin-Manuel Miranda liking a tweet of mine (which he did once, coincidentally).

Since then, I have learned that I can reach out to these people when I need to: I did just that when the movie Me Before You premiered, as friends, colleagues, and the mass media at large rebuked or downplayed my objections (and others’) to the film, which ultimately argues that a disabled life is not worth living. Instead of having my feelings validated, I was surrounded by the idea that the movie was a narrative worth paying money for, unharmful to me or my community. Yet in reaching out online, I found a community not afraid to talk to one another about the issues that impact us, and willing to acknowledge, support, discuss and debate time and again.

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At the 2017 Marianjoy Inspire Awards

I should reiterate, however, that the disability community does not solely exist online. I’ve seen the community up close at the 2015 Society for Disability Studies Conference in Atlanta, where hundreds of scholars and activists gathered to learn from one another during the 25th anniversary of the Americans with Disabilities Act. The “real life” disability community I know also includes a gym in a hospital, and the faces of kids aged three to eleven who loved nothing more than to be surrounded by other kids like them, singing and dancing their way to a successful performance of a mini-musical. It also includes the hallways of a cramped building, owned and operated by Easter Seals, where I received occupational and physical therapy for the first thirteen years of my life. One of my therapists there is directly responsible for my love of musical theater and I would like to take a short moment to say thank you to her for letting me secretly listen to RENT while I was doing stretching exercises.

While all of this is true, technology often gives us the opportunity to engage with each other when our times, spaces, and contexts do not align. This was reiterated by multiple disabled Twitter users when I asked my network: “why is online accessibility important to you?” For some, the importance of online accessibility boils down to just being able to exist in our society today; as @annieelainey noted, “the Internet has become a vital part of daily life; news, jobs, education, goods, etc…[and therefore] should be equally accessible to all!”. Other Twitter users, such as @DayAlMohamed and @alannarwhitney, pointed out that online accessibility is essential for those who need alternatives to common communication methods such as printed text or phones, and that when online information is not accessible, it is detrimental to people who need the Internet as a space where they can live, learn, and grow. In the words of @ChrisDisability: “Just because you have a disability doesn’t mean you shouldn’t be able to participate”.

Therefore, the privilege of being able to participate in these important conversations is not lost on me. It’s important to remember that disability is diverse, even within those who are disabled. There are millions of disabled people who don’t have access to the technology or resources that would allow them to also take part in the online community that I have found to be so helpful in cultivating my identity as a proud, disabled person. The Pew Research Center reported in 2011 that “Fifty-four percent of adults living with a disability use the internet, compared with 81% of adults who report none of the disabilities listed in the [national] survey [conducted in September 2010].” The Center also notes that disabled folks are “more likely than other adults to live in lower-income households” and “to have low levels of education” than their able-bodied peers.

These barriers–and others such as website accessibility, or even the availability of a computer–still exist for many disabled individuals, especially in the Global South. However, more people than ever before–one group being disabled people–are mobilizing around the issues that are important to them in both online and physical spaces. One week, it may be the portrayal of disability in a feature film, but the next week may bring about a more sobering conversation on the intersection of race, disability, and police brutality. We live in a special time where technology gives us the opportunity to form coalitions of ingroup and outgroup individuals that fight for equity and inclusion. The conversations, and connections, that we have online are real and matter.

It’s a small thing, but an important one–the fact that I am able to do this work across time and distance, and for it to be welcomed by others. Of course, sometimes, the work isn’t welcomed by others and that’s ok: that’s a part of the educational process. But knowing that I have a community of my own, a community of diverse individuals–disabled, Black, LGBTQIA, Asian, women, etc.–behind me is not only empowering and self-esteem boosting, but fills me with pride for who I am: and as Twitter user @Rtmiss says, “…staying connected with friends is a vital part of keeping my mental health in balance.” My pride as a part of the disability community encourages me to be emboldened in my role as an educator, where I take every chance I have to discuss issues of disability with students, staff, and faculty.

My lived experience as a disabled, bisexual, Jewish man hasn’t always given me those feelings of pride and purpose. But through social media, I am able to educate peers, colleagues, and family members on disability rights issues and also connect with other disabled individuals. As someone who yearns to be an educator at the collegiate level and considers himself to be a life-long learner of everything except math (because math is HARD), I can’t help but to quote from the hit-musical Hamilton and say “Look around, look around, at how lucky we are to be alive right now”, for I live in an age where I can participate in educational discourse without being in “the (actual) room where it happens”.