Co-founder of FOLX, Justin Levesque, discusses using arts to create inclusiveness at the crossroads of illness, masculinity, and identity.

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Hemophilia, a condition affecting mostly men, is caused by a missing protein in the blood that is required for it to clot properly. This leads to a predisposition to bleeding that varies in severity, including most commonly into the joints which can then develop into arthritis. More dangerous types of bleeds can also occur, such as brain bleeds. To say the hemophilia community has been through a rough path is putting it lightly. While some are familiar with the name hemophilia because of history books describing how it affected the Russian royal family, most don’t realize that the more familiar narrative in recent times is that of stories like Ryan White. Ryan White was the boy that was banned from attending school in the 80’s once it was discovered that he had contracted HIV from the blood-based factor medication that was used as treatment for his hemophilia. The tainted blood product killed thousands and left survivors living to this day with HIV, Hepatitis B, and Hepatitis C. The current middle-aged generation will be some of the longest living hemophiliacs. Many in the community are still angry while many others want to move on without referencing the past. What does the generation following this mass-tragedy do to reconnect the community? Justin Levesque is utilizing the communicative nature of the arts through a project he co-founded called FOLX, to promote inclusiveness and celebrate diversity in the face of a sometimes limiting health condition.

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How has your life in particular been affected by a bleeding disorder?

I’ve had, at least medically speaking, a pretty typical experience living with a bleeding disorder. If I ever had uncontrollable bleeding or was able to anticipate potential internal trauma, I’d intravenously infuse an (expensive) anti-hemophiliac factor to replace the missing proteins necessary to clot. From there I had roughly 8 – 12 hours to worry a little less about my body. The medication worked great.

In February 2012, this all changed. Four days into an excruciating elbow bleed, without any sign of improvement despite repeated infusions, it was discovered I had developed an inhibitor (an immunologic response to the clotting factor where antibodies breakdown the now considered alien proteins rendering the treatment useless). I went from using a generally efficacious medication to having to use what’s known as a bypassing agent. They’re as much as four times the cost of regular factor and can take up to 45 minutes to infuse while some are only effective for a mere 2 – 4 hours. Most affected by an inhibitor undergo a rigorous desensitization process in attempt to rid the inhibitor.

Inhibitors mean it’s harder to infuse preventatively; it takes longer to resolve a bleed, and subsequently, an accelerated degradation of joint health and physical stamina.

How has hemophilia affected your interest on the topic of identity with chronic illness and masculinity?

A few years prior to inhibitor development, I prepared for my BFA Senior Thesis Exhibition by researching bleeding disorder culture/history and making artworks that considered how three narratives of my identity interact: having hemophilia, being a man, and being a man who’s queer.

hemophilia vs. queer: There’s a complicated historical entanglement between the LGBTQ community and hemophilia. Both were hit hard by the HIV/AIDS crisis in the 80’s. Some still inaccurately believe people with hemophilia were innocent victims of a gay disease.

queer vs. masculinity: This isn’t anything new but essentially how my queer identity as gay man meets or fails to meet expected masculine gender norms in society. How does it challenge the culture of masculinity? Why does masculinity feel threatened and respond in fear to my queerness?

masculinity vs. hemophilia: Hemophilia is a predominately male-affected community due to sex-linked genetic inheritance. This group of mostly men must navigate their identities under the expectations of masculinity in society and at the same time must negotiate that process with the ultimate form their physical limitation might take. Bleeding disorders are profitable for pharmaceuticals. How are images used to perpetuate and capitalize on a hemophiliac’s potential insecurities about masculinity? How are images being used to prescribe successful outcomes onto bleeders?

How did the idea for FOLX come about?

In October 2012, post-inhibitor diagnosis, I attended the National Hemophilia Foundation‘s Annual Meeting. Surprised to see an LGBTQ rap session, I went and first-met fellow queer bleeder, Philip Smith, who moderated the session. Somewhat instantly, there was this energy in the room. We were a small group of folks who, either by our queer identities or by our bleeding disorders (or by both), were in ordinary circumstances “othered” within a kind of macro social ecosystem back home. I’d heard something similar in conversation just two months before at an Education Summit for people with inhibitors. For bleeding disorders, those affected by an inhibitor experience that same “otherness” through institutional exclusion within our own community; a kind of micro social ecosystem. Admittedly, until my own inhibitor development, I was ambivalent to this additional complication. “Not my problem” – until it was.

After the session, Philip and I pinpointed other forms of exclusion: inhibitor development is statistically more prevalent in non-Caucasian populations, women with bleeding disorders go undiagnosed or are labeled symptomatic, the minimization of other bleeding disorders like Von Willebrand disease, hemophiliac survivors of HIV/AIDS who represent a past crisis others wish to forget.

Rooted in both disability & queer theory, FOLX was created to respond to these forces and their micro-aggressions. With programs/education that recognizes “folks” from diverse backgrounds, we aim to dismantle and rebuild, to acknowledge and celebrate, and to hold accountable the institutions that require us to reclaim our image.

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Philip serves as Education Director while I serve as Advocacy Director.

Can you tell us about some of the projects you have/are working on with FOLX?

There are a few ongoing initiatives. We’ve led educational sessions about using inclusive language for staff/volunteers that run bleeding disorder summer camps, have had conversations with healthcare providers about LGBTQ issues, and have provided regional bleeding disorder resource organizations guidance on incorporating more diverse programming.

Most recently, we’ve focused on the ways bleeding disorder image culture mandates myopic physical rites of passage as the only way to achieve successful outcomes in the human experience. To reclaim our representation from the culture, or rather, cult of masculinity and the machine of healthcare profiteering, we seek to look beyond the physical measure of success with programs that celebrate creativity; from arts and music, to activism and ingenuity.

The Art Stars Trading Card Series: By subverting the tradition of collecting physical icons on baseball cards, we created a trading card series to recognize individuals from the community for their creative work. Cards are distributed at two national events through the year, each with a new volume of contributors.

Blood Work: An upcoming and first ever, gallery exhibition of artworks, music and poetry from the bleeding disorder community to be presented at the National Hemophilia Foundation’s 66th Annual Meeting. I guess you might say we’re a little excited about this. It’s a big moment to publicly proclaim to all involved, “Pay attention! These are the images and the sounds that represent us,” while simultaneously empowering the creators of these works to keep on keeping on

Why do you think placing importance on non-physical feats is important for those facing chronic illness?

FOLX believes that anytime someone with a chronic illness can overcome the body as the battleground of their disorder as a personal achievement is totally awesome; it should be celebrated. It’s a testament to how the importance of medical research and the advancement in treatment options can provide opportunities to folks that were not previously available.

But these newly formed spaces of opportunity are tricky. They create a chasm between reality and the crusade for normalcy. They allow folks to no longer, or perhaps less frequently, visually signify a limp with their condition. And even more so, any visual signification of their condition forms a compounded and stigmatized antithesis in that quest. Why are we exchanging a previously held importance on education and expression for narratives that more often than not only promote successful physical outcomes? It’s likely at some point in a bleeder’s life, they will experience some form of physical inconvenience or limitation. What are they supposed to do then? FOLX discusses how careers in the creative economy, academia, or technology provide sustainable options for livelihood.

As a note, it should go without saying that it’s obviously an ideal situation to have access to effective medications that prevent painful bleeding, maintain the body and promote longevity. It’s also an immense privilege. According to the World Federation of Hemophilia, an estimated 75% of the world’s bleeding population goes undiagnosed or without treatment.

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What do you hope FOLX will achieve in the future?

FOLX wants to continue engaging the members of the bleeding disorder community in these conversations. With any luck, we hope to solidify our position in that conversation and fully develop our education, advocacy and outreach efforts. We want folks to keep challenging assumptions based on their perceived identities as Blood Work continues to internally propagate a visual lexicon of bleeding disorder content and images.

What do you think people without bleeding disorders or chronic illness can take way from a project like this?

If anything, FOLX truly operates within a framework geared toward asking questions, challenging privilege and dismantling social archetypes. It’s a model that can be applied to pretty much any scenario in the human experience.

Want more information on Justin Levesque and FOLX project? Check out his site for more information.