“If you take care of the seconds, the years will take care of themselves”
Khairani Barokka (Okka) is an Indonesian writer, performer, spoken word poet and an advocate/researcher who travels the world exploring disability rights and justice. Okka has a rare chronic neurological/neuromuscular condition (an invisible disability) that causes immense pain, spasticity, muscle rigidity, and fatigue among other things--but that hasn’t stopped her from being incredibly motivated to travel the globe, challenging perceptions and breaking stereotypes through her art and performances. She has performed in Australia, Singapore, Malaysia, USA and India to name a few, was the first ever Indonesian writer-in-residence at Vermont Studio Center - the largest international artists’ and writers’ residency program in the United states and is a two time TEDx speaker.
In this hilarious and insightful interview, she talks about how her condition changed her life, her obsession with kites, travelling and bad jokes. You can connect with Okka on her Twitter and her website.
Tell us something about yourself. What do you do? Maybe start with ASL?
HAHAHA! OK - 28 F and Mumbai at the moment. I was born in Jakarta, raised there and in upstate NewYork and Melbourne, Australia. I’m a spoken word and performance artist and a writer of poetry, fiction, non-fiction and bad jokes. I thought I’d be able to make a living from my bad jokes which obviously did not happen so I turned to poetry (which also happens to be the most lucrative profession in the universe). But otherwise, I make a living by teaching performance poetry, creative writing, arts consultancies, giving lectures, writing articles and conducting workshops. I’m also into a lot of interdisciplinary/public art that deals with disability rights and justice in particular. I live to perform. I'm based in Jakarta but spend most of the year outside Indonesia, and generally work location-independent.
I call many places home, and especially if you’re a traveller, you can be at home everywhere and nowhere--and right now I feel like Bombay is so much like home. I’ve never lived in a house continuously longer than three years of my life so I’ve always been mobile.
What exactly do you mean by performance art/poetry?
Performance art is, to me, simply embodied, performative art. It has so many possibilities that I'm still only just exploring. And for those not familiar, performance poetry, or spoken word, is basically poetry for the stage and poetry that can be enjoyed orally. I feel like I’ve had this crazy abundance of energy all my life and when I’m on stage, it’s like moksha and I’m in the purest form of myself. The interdisciplinary part of it is because I collaborate with visual artists and sound artists. I'm also big into public art in general.
How did you choose spoken word and what was your journey that led you to this choice?
I’ve been writing poems since I was very little, but lost confidence in it for a long time. For one and a half years, I didn’t write any poetry and I thought there was no way I could even remotely earn a living out of this stuff. Also, a series of bad shit happened to me for over a decade, and I just gave up. But at some point I realised, or rather the universe was telling me, that I really had to only do things that I found interesting. That’s kind of the logic of my life. People may see my activities as all over the place, but actually, whatever I do, whether it’s disability culture, academia or when I’m writing sci-fi, it’s completely part of this exploratory spirit--and there's always a thread that ties it all together.
I could say I’ve kind of been lucky to have long medical breaks because when you hit that many rock bottoms in a row over years--in my case, I've had both mental and physical health concerns--there’s nowhere to go but up (it's such a cliché but it's true). Because I have this neurological condition in my body, it really forces me now to enjoy the moment and focus on work that is joyful.
"I feel most at home when I'm in transit"
Can you tell us more about your association with the disability arts and the likes?
I have an invisible disability and as a result, more than half of my body, on the right side feels different from the left side. At a certain point, during my long medical break, my closest friends knew that I named each part of my body after a diva because they’d always act up. Like my chest would be Beyonce, she’s a huge fucking diva and is always kind of weird. At this moment [during the interview], she’s acting weird. My face would be like Lady Gaga and that kind of thing. We’d have code names.
I’m always in some level of pain but I don’t always hurt. (That's the difference I spoke about at TEDx Youth@Chennai) Pain is perception - if I keep myself busy and happy, I can ignore it (although, sometimes the pain is so bad that it makes me super tired and I can’t do anything but lie down, and I do occasionally cry but mostly after Oscar-nominated tearjerkers). Most of the time now, I do not actually register that I’m in pain because the minute you don't judge the pain and stop saying “Ack God! Why why why!?” and start seeing it as just another thing in your life, you start accepting as it is, and don’t put a value on it as positive or negative. I've recently been practicing mindful meditation, and have realised this a lot more.
Once I accepted that I'm an artist with disability, it opened my eyes to an amazing world of arts and disability activism going on, people working towards more access to arts both as appreciators and creators--and there is a huge lack of accessibility worldwide still.
Then, is it right to use the word 'disability' in the first place?
"Disability" is a potentially fraught term, and some people prefer "different abilities", or in Indonesian activism, "difabel", etc. But the term ‘disability’ is very useful in activism. People used to think of disability with a medical model, that it was an inherent lack, but there’s the now-accepted social model and there’s an affirmative model of disability. For example, UNESCO recognises disability as something that stems from socio and economic circumstances - that’s the social model. So if you have a sight impairment, your disability comes from the lack of facilities provided for you, societal discrimination, etc. The affirmative model is when I say “I’m a person with disability and I’m proud of it.” We are the largest minority in the world and it’s really difficult for some people to understand this attitude. To set the record straight, people with disability don’t need ‘healing’, unless you consider yourself as I do--a person with chronic conditions that constitute a disability. If anything, people with disability are teaching themselves to ‘heal’ others of their discriminatory mindsets.
"People who have different abilities face more obstacles because society is the way it is, and not because we are inherently lesser"
What are the most common stereotypes associated with disability culture?
It can be hard to try to talk about disability culture, because a lot of people think disability is something that is negative or "flawed". It comes from that old medical model I spoke of, that if you are part of the blind, deaf or physically disabled community you are lesser, you are deformed or have a defect. When that perception gets translated to everyday life, you get comments like, “Aw! How amazing that these people are in ‘wheelchairs’ (I prefer to say "wheelchair user") and they still shine” and all that kind of bullshit.
I went to the first ever Ms. Wheelchair India beauty pageant here in Bombay, and amongst all those people, there was a contestant I spoke to who compared using wheelchair to wearing spectacles, and it’s the same thing, you don’t feel lesser because you need an instrument to see better. People who have different abilities face more obstacles because society is the way it is and not because we are inherently lesser.
What is your take on the word "inspiring"?
Disability should not be fetishized and just because you have a disability, it does not necessarily make you inspirational. It is for me, not a defect in any way. Most disabilities in the world do not really involve physical pain, but the pain of prejudice.
I like it when people say something like “truly inspiring” if they were positively affected, but I think that word needs to be unpacked and deconstructed to context when you’re talking about an artist with disability. “Oh! They have Down Syndrome but they’re dancing and singing and that’s inherently amazing and inspiring.” I don't think so, especially because I have met many such artists, who amaze me for other reasons. They’re people who are artists and you should be inspired by their talent, and see it that way. I once produced a poetry show with 20 performers from the disability arts community in Indonesia. I remember a lot of people cried while watching the performers; I wanted to ask the question "Why? - Are you crying because they have Down's Syndrome or are blind and they’re performing on stage and subconsciously you think they are inherently less or is it because you’ve finally realised how society treats people with disability, and that it's very difficult to make headway as an artist because of it, or because of their talent?"
How do you fight these stereotypes?
Art always has been and always will be the best way I know in my world to eliminate stereotypes of any kind. When somebody connects with you on an emotional level based on your work, they are connecting with you soul to soul. They start accepting you for who you are and that’s very important. But on a general level, people have different bodies, minds with great diversity and that’s the what everybody needs to start appreciating about each other.
The insights that come out of arts and disability are incredible. If you see the world as a place that is inherently super unfriendly to people who need to pace themselves or to those who don’t understand disability culture, art helps you express like no other medium. For example, not everybody wants to get a hearing implant because they actually like being deaf a lot. It’s a choice and people get startled when they hear stuff like that. For example, there's a play from an Australian company (Back to Back Theatre) where all the villains are women with disabilities and that to people is such a mindfuck. We need to realise that people with disability are humans just like everybody else, and we have to start accepting that we can be great people or assholes just like everybody else.
You said you only perform barefoot. Why is that?
I’m truly myself when I’m barefoot. I grew up in upstate New York really loving nature, and I got really depressed after moving to Jakarta because it was just concrete everywhere. I’m comfortable when I’m barefoot. I even lecture like that. I think, in the last two years, there has only been one instance where I have performed wearing footwear--only because I forgot. (haha!) I looked at the pictures later and felt awful about it!
It’s also kind of an F you to the culture that makes women destroy their feet by wearing heels and whatnot. For me, since I experience a lot of discomfort in my body, everything I wear needs to be big on comfort.
"The best artist you can be is when you are truly yourself"
What's the obsession with kites?
No one has ever asked me that question before. I used to think of kites as this unattainable thing because they were always associated with joyfulness and community and play. I was such a serious thinker kid and a big introvert, kinda anxious and depressed though outwardly social--I used to feel isolated a lot and just bury myself in books.
Now, I feel like I’m in a world of kites - they fly but they’re tethered. It’s super important for people to fly as high and far as you can but be tethered to things that are really important to you - family, values, creativity, art or whatever. Have something that you can come back to that reminds you why you do what you do.
Two of your best (worst) jokes ever.
All the ones you’ve been fake laughing at since the time we started this interview. Hahaha! I love puns because they are fun intended! That’s my best one. I can try (and fail) to make a pun out of anything. And jokes:
O - When an auto stops at the right place, what do you call it?
Y - Ummm….
O - An AUTOCORRECT!
Y - HA HA…. I’m fake laughing right now.
And this one:
O - What’s the name of the American auto driver?
Y - WHAT!?
O - Rick Shaw.
Y - ………… I really asked for this. Weren’t you saying people pay you money for doing what you love? I’m not paying you any money for this one.
O - This interview is over.
What does being global-local mean to you?
It’s actually a journey and constant work in progress. I’m a very proud Indonesian and I love going back to my family and I want to do a lot more with the arts and disability community in Indonesia. I recognise that I’m not the happiest if I’m not travelling a lot right now... but I see my localness as part of the Asia-Pacific region and I feel compelled to show it to the world. People who change perceptions such Back To Back Theatre who have this act called “Ganesh versus the third Reich” which is a play about Ganesh travelling Nazi Germany to reclaim the swastika which is an ancient Hindu symbol. That's my kind of tribe. You find those kind of creative souls everywhere in the world.
So it’s not just about geography, but it’s community in a lateral sense. At the moment, it’s great being an Indonesian artist travelling and representing the world’s biggest minority in the arts.
What are the top three favourite places you've ever been to?
1. Cambodia - Angkor Wat temple is SO awe-inspiring.
2. Any quirky book store especially if they sell second hand books, such as Strand in NYC, Blossoms in Bangalore, Readings in Melbourne. Places like these are my chapels.
3. A three way tie (I'm cheating, sawry!) between Varanasi, some deserted beaches in Goa and Kathmandu.
1.Sigur Ros - I have had the great fortune of partying with them and I told Jonsi, “Thank you for my entire adult life”. My friends were pretty embarrassed.
2. Most of 90s R&B. I collect a lot of cheesy music.
What is that one thing that keeps you going?
Living with disability in my case is just a different lifestyle. It’s living in a different way-- I live both slow and fast lives. For example, this past month, I’ve been in 4 countries and Bombay is the 11th city I'm in---in a month, which is insane but I cannot be happier than at this point in my life. I’m stuck to horizontal surfaces a lot of the time but inside, I have a very nomadic soul and I really want to meet people in places that I’ve never been to before. That’s what keeps me most happy.
Nobody knows what is best for you apart from yourself. It’s kind of the reason why, as a Muslim woman, I’ve decided that I’ll never pray behind a man ever again in my life--because I just don’t think anybody has the authority to tell someone what they should be doing. All these beliefs and the need and want to change things and grow for the better is what keeps me going.
What does success mean to you?
For me, success is acknowledging what is important to you. Even if you're doing something that you don't think is meaningful to you right now, if you acknowledge it, you are halfway there--because you are filtering the junk out and identifying specifics that contribute to your individual definition of happiness.
Last question - What do you say when someone says "Oh My God!"
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