durian amok: happy disability valentine’s!



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Do me a favor: please picture, if you will, the last few Valentine’s Day-related ads you’ve encountered. On television, online, in a print magazine or newspaper, on a billboard, in the movies, plastered in front of your Jakarta bajaj seat or on a New York City cab screen. Wherever you are in the world, some basic annoying heteronormative gender tropes are bound to apply, along with some good ol’ reliance on consumerist assuagement of a significant other, all to perpetuate this strange flowerbud-and-cologne-splattered holiday. Now think about it. When was the last time you saw a woman with disability in an advert related to February 14?

If you’re disability-conscious, are one of the roughly 650 million people on earth and counting with disability, or have friends and/or family with disability—which, given those numbers, you probably are—you’ll know that was a trick question. A lot of times you can’t tell if someone is disabled by looking at them. The author of this piece has neurological/neuromuscular interestingness that is manageable and now largely invisible, and though sometimes it’s quite obvious to the seeing eye, I wouldn’t blame people who’ve never seen symptoms who wonder why I call myself disabled. There are physical, sensory, intellectual, psychosocial, and all-other-manner-of-rainbow-colors of disability, and whether a wheelchair user kicking ass on a dancefloor or an autistic self-advocate, there are innumerable examples of people living dignified, incredible lives without seeing differences as “setbacks” or “limitations.”

The obvious reality is that society has a hella long way to go in terms of being friendly to all kinds of bodies and minds. There are roadblocks in the literal and metaphorical sense everywhere you go if you’re part of the largest minority in the world. Another part of this reality—no surprise to readers of this publication—is that women, the socioeconomically worse off, people with more melanin than others, and those for whom all these categories apply do not have it easy, and all these multifaceted marginalizations are compounded when you are also a person with disability.

Are we getting to Valentine’s Day yet? Go put on some Marvin Gaye and break out the teddy bears and bon-bons. Meet you here in five minutes.

In a world where able-bodied, neurotypical, Western, Caucasian human beans overwhelm media-saturated psyches everywhere, in terms of what people who have and give love are supposed to look like, where does that leave disability communities, especially in other marginalized groups, non-Western countries?

On a scale of ills facing the world, an increasingly internationally-adopted excuse to get busy and share love is far from the biggest threat to humankind. But the crass consumerism of Valentine’s Day and the overwhelming hegemony of what we “should” think of when we think about love—with an able-bodied, neurotypical, et cetera, et cetera—bring into stark relief the difficulties of presenting yourself as disabled with romantic and sexual needs and desires. Every single person with disability deserves as much guidance and support with fundamental life concerns such as expressing your sexual orientation, reproductive health, how to have emotionally and physically healthy relationships in general. This in a world where it is difficult to even be on the sidewalk if you have certain disabilities, let alone find a birth control provider who understands your needs as a paraplegic, or figure out if that guy who pinged you is into your shared and overwhelming love of Iggy Pop or is secretly a fetishist for the blind.

There is no one “disability” experience of negotiating love and sex, just as there is no one “Chinese” experience or “teenage” experience. For every person with disability, there is a different story, and different challenge, and different language of caring and neglect. I am blessed to know many relationshippers in sweet puppy love—on both sides of the equatorial divide—who have the same or different disabilities, couples where one member identifies as being disabled and the other does not, and admire people who choose to be single and happy and bear the brunt of condescension not only for this, but because they live with disability. I also know, with great regret and again, on both sides of the equatorial divide, people whose own families abuse them because their disability is a source of shame, women who find difficulty obtaining proper marriage law and sexual health information because this knowledge is not accessible to all, and columns in popular media where people ask advice about romance with someone arrogantly perceived as tainted or less capable because of disability. The horror stories still far outweigh those where understanding and respect have triumphed.

V-Day actions and events happening all over the world on Valentine’s Day are a great way to highlight a scourge that is enormous and endemic: violence against women and genderqueer folk. What we need to highlight is the interlinkages between physical, emotional, and sexual abuse against women and the depressingly even higher incidences of such abuse against women in vulnerable positions not inherently because of disability, but because of how society disrespects disability culture and disability needs, from the most intimate spaces outward. We can start by being conscious of how to make all information about sexual, reproductive, physical and emotional health accessible to people of all abilities, and by encouraging spaces where disability love stories can be told, in art and in anecdote.

A publisher colleague in the States recently told me of Jillian Weise’s acclaimed poetry collection, “Amputee’s Guide to Sex”, and how some people recoiled at the thought of this as “taboo”. I thought of disability and arts activist couple, Petra Kuppers and Neil Marcus, and their writing in “Cripple Poetics” of the carnal, sensual, and deeply committed between two people in love and using wheelchairs. I thought of “Rust and Bone” with Marion Cotillard playing a woman who becomes physically disabled, taking the reins in a relationship, straddling a lover post-amputation. And I thought of how much I would love to see the day when we can tell more and more of these stories about how difficult and wonderful  it is to try to forge connection in places where for anyone, let alone someone discriminated against for disability, it is frowned upon to speak of these facts of life.

For all award-winning documentary “Murderball” was valuable for male wheelchair rugby players’ perspectives on quadriplegic dating, I would kill to see women quadriplegics’ perspectives get as much attention. If you are a woman with disability in a village in Indonesia, you have just as much a right to share your story without shame, and learn you are not as alone as you may have thought. As Kuppers talks about “decolonizing disability”, we should call for a flourishing of diverse, subaltern storytelling about love and sexuality, and the weird and wacky and fun and painful individual tales that exist in disability communities worldwide.

Having disability requires and enhances massively attuned problem-solving skills, in a world that doesn’t provide for difference. This is why we should be hopeful—love, in its myriad forms, in the sense of creating an environment of romantic and/or sexual respect, finds a way. The best private lives we can possibly achieve, for people of all needs and abilities, is not as much a pipedream if we put taboos aside and embrace our mindblowing variety. And let me tell you, disability communities, we can really be thankful for a legitimate excuse to make out in disabled-access bathrooms, with much less shame than those who don’t identify with disability. Just gave you a free idea—go celebrate. Happy Valentine’s Day.

Images via 3e love, umich






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Khairani Barokka

Khairani Barokka is an Indonesian writer, performer, artist, teacher, and advocate/researcher of inclusive arts. Raised in Indonesia, the US and Australia, she’s currently based in her birth city Jakarta. Okka is a proud alum of the Interactive Telecommunications Program (ITP) masters at NYU’s Tisch School of the Arts, where she was a Tisch Departmental Fellow, is writing a book entitled “Flightpath to Inclusion” on arts, tech and disability empowerment, and constantly forges collaborative, cross-cultural arts projects and partnerships. She loves finding peace behind a pen, behind a mic. www.khairanibarokka.com / @mailbykite





3 Responses to “durian amok: happy disability valentine’s!”

  1. […] This is my writing for The State, which can be read here: http://www.thestate.ae/durian-amok-happy-disability-valentines/ […]

  2. Zed Power says:

    the texture of words

  3. […] A longer version of this piece was originally printed in THE STATE magazine. […]

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