[Guest Post] We Are the Burst of Orange Juice

This is my sister Radha’s second blog post about life as an autism mom. 

Just because my son has grown so much in the last few years, we nicknamed him Gumby*. So that’s what I’ll call him here.:)

Years before Gumby agreed to taste oranges, he loved to watch people peel them. If one of us sat down with an orange, he would come running. He would wait till the first piece of peel was off, and the juice, released suddenly, would burst into the air, and then he would laugh and follow the arc in the sunlight with his gaze.

We soon learned to find a pool of sunlight to sit in, staging the whole thing just to entertain him. There’s something so infectious and fun about playing with food just to make an autistic kid giggle.

It was only one instance of how the energy we bring to the room is what Gumby feeds off. We could deny it, rage against it, or submit to it, but in the end, we are the sun and moon and stars for him. He knows when we are happy or just faking it. If we walk into the house still in outside world mode, he asks us to fall onto the couch and tickle him, repeating the request and simulating the action until we surrender to his need for contact. It’s no mean feat to horse around with a lanky, strong fellow who randomly drops his guard, so we have to focus. Otherwise we could end up with a foot in the nose. Ow.

He wants to burrow into our ribs, it feels like. Gradually, we relax into it, and the laughter in his voice tells us we have succeeded in leaving other distractions behind.

It’s the same with conversations, cooking, any household tasks, or guests who might drop in. He watches and listens, runs underfoot, tries to direct and choreograph the actions, and thrills in being part of the group. We give him little chores and he quivers with delight. Guests occasionally get arranged and told where to stand or sit, and most comply with good humor. You can’t drop in Chez Gumby and not expect to be a chess piece in his game of life. He once managed to get a census worker to rub his feet.

Observing him, I’ve realized that the Gumb has us all as balls in the air. He juggles us because he has to. That’s how his mind works. All of us are in the front of his mind all of the time. If one of us leaves the room or changes what we are doing, or someone new enters, all the balls fall on the ground. He picks them up, with the new ball (or data) added on, and resumes his juggling.

He’s a busy guy. This is why he sleeps early, because shutting his room door is when the balls go into their box for the night and he can still his thoughts. I respect him so much for knowing when he’s had enough. There’s only so much OJ and juggling a boy can take. He sleeps the sleep of a hardworking guy who’s earned his rest.

Ever conscious of being the burst of juice in the air, we have learned to be predictable so he can understand our cues. In turn, he’s expanded his definition of what’s acceptable, and so we all muddle on. It’s not as simple as that, I’m sure you know that. Flexibility isn’t his forte, and boundless energy unfaked is no one’s natural demeanor! We all have to dig deep some days.

It’s a huge responsibility to be that burst of juice, that ball in the air. The only way to handle it gracefully is to do what we do without getting too self conscious about it. His understanding of us is very nuanced, and he wants that arc of energy, not the effort behind it.

The answer to the question “What does Gumby want from us?” is simple–everything, but don’t talk about it.

Radha.

*disclaimer: Gumby is the clay animation figure created by Art Clokey. We use the nickname in affection, and I am not making any money off the name.

[Guest Post] Putting Down the Backpack Sometimes

This is a guest post by Radha Lath, who lives in New Jersey with her husband and two children. Radha is my sister. We grew up very close to each other – in fact, being only a year apart in age, we were convinced for the longest time that we were twins. I’m featuring a series of posts that she has written about living with autism. These posts give a wonderful insight into the mind of an autistic child through the eyes of a caregiver.

In my life as an autism mom, I see myself in my mind’s eye as carrying a (fashionably cute) backpack around all the time.

In it, I carry around, symbolically of course, both useful and not so useful things that have become my companions in this journey–patience, flexibility, acceptance, love, and even some guilt, grief, stubborn pride, and apprehensions about the future.

Most days I feel safe knowing my backpack is with me. It’s come to define me. Who would I be without it? I’ve been an autism mom for ten years and I’ve packed this bag myself, with my own hands, stuffed it full of what I need to stay cheerful and still be me. Even the not so positive contents need to be there. If I denied those thoughts, they would still haunt me in my sleep, or storm upon me when I’m beaten down. Might as well accept it all, and carry it as my insignia. I wouldn’t be Radha without all of it. I’ve earned the right to carry this backpack. All of you with special needs kids know what I’m talking about. I have fought a lot of external and inner demons with what I carry around in my pack.

Every so often, though, I set this backpack down. It always costs me a small pang to take it off, so snugly does it fit. But it’s crucial to take the occasional break and be a wife, daughter, sister, friend, and just my own person too.

We have semi regular babysitting, and we’ve done Bollywood movie nights, bookstore browsing nights, random-drives-just-because-we-love-to-chat nights, and theatre nights.

We’ve also done a couple of overnight trips–we took our other child to Six Flags,and we went, just the two of us, to a bed and breakfast in North Jersey–the less said about my raging pollen allergies the better. B and B in the mountains was not my finest moment! We have a planned overnight to the beach this summer, much better for Ragweed Radha.

We keep trying different outings, both to spend time as a couple, and to give our daughter different experiences and time with us. She is the best sister ever, and we do a lot of family activities, but she deserves the occasional ritual-free jaunt.

Now we all know that the backpack doesn’t stay at home. Hah. Of course I pack it in the car with me. I peer into it periodically when I text the babysitter to ask how my son is. I pat it affectionately when she texts me photos. I wear the guilt and shame when he is crying and I talk to her on FaceTime and we brainstorm about how to solve the problem. It’s usually sensory related, and easily solved once we get a look at him. But oh, I torture myself that I am not there! I wrap the scarf of acceptance around me when I forgive myself and admit, after a few hours of fun, that I miss him and want to go home.

Back home again, I wear my fashionably cute backpack again. I don’t always welcome it. It was nice to get a break from it. It felt good to have grown up conversation, and laugh without worrying that I will upset my son’s quietude. It was nice to focus on my husband for a while. And let’s just go on and admit that the little guy enjoyed the break from us too! We can tell from the photos of apple picking, from the remnants of his restaurant dinner on his shirt, and the happy shrieks when the babysitter plays with him.

And yet–we all merge back as a unit, our noisy, twitchy, darling son throwing himself at us for hugs, our family full of perfection and flaws, everyone needing to breathe in his beautiful smile, touched and entranced by how just being all together again fills him with nonsensical, manic happiness.

I do need to put the backpack down sometimes, and remember who I am. But I also need the breaks so I can experience all over again why I am so blessed. Such uncomplicated love that he has for us is a beautiful gift. Such complicated emotions that I carry around daily are my legacy as an autism mom. In this life, if this is what I was meant to do, this particular backpack is the one I was meant to shoulder, then I am a fortunate mother indeed.

Radha

Finding the words…but softly

Painting of Draupadi vastraharan by Arun Prem (Source: https://bodhikshetra.wordpress.com/)draupadi2.jpg

You’re holding court

I know how you do it

I’ve seen you do it

I’ve HELPED you do it

You pick up the skin of the abused

That you tore off piece by piece

and stitched so that it fit just right

You wear the skin of the abused

To hide your own skin

The skin of the abuser

“She left me,” you say

Eyes fill with crocodile tears

“Come to my home. 

Eat my food.

Watch me light my lamp.

Listen, rapt, as I tell you

The tale of her descent into madness.

Pity me.”

“After all I did for her.

She left me

There was another man, you know

Otherwise she would have been with me

forever.”

Draupadi promised me

That my skin will burn on you.

But I will be dancing, somewhere far away

While you go up in flames.

It is inevitable that an abuser will accuse his victim of betrayal when she finally finds the courage to leave. The story of his own betrayal of her trust is not required by society, which is programmed to judge women on the basis of their compliance with social rules, and to shame them when they resist. If you are commiserating with an abuser, know that you are part of the problem.

Or give me death: The tyranny of happiness

On Deepavali this year Jeremy casually slipped me a gift-wrapped book when he arrived at my party. This was two months ago, and at that time I made the usual noises of gratitude and you-shouldn’t-have that one does in such interactions. The following morning I opened it and Instagrammed it. As one does.

IMG_3886

But it was only this evening that I humbled myself, made myself vulnerable, and gave it the respect of reading it. It has been the most difficult year of my life, and mounting depression has led to thoughts of suicide. There are days when all I can do is sit and stare out the window. (And those are the good days.) Or scroll mindlessly through my Facebook feed, looking at all the exhortations to be grateful, to make yourself happy, to view your obstacles as stepping stones to happiness. I have tried them all. I do have a lot to be grateful for. I have written the list. It hasn’t helped. Because it was not a lack of gratitude that broke me. So how can a surfeit of it fix me? Same thing with all the how-to-be-happy directives.

So you can perhaps understand with what cynicism I approached the book that Jeremy had given me – “On Happiness”. It wasn’t that I expected the book to be about how to be happy, or what happiness was. Which philosopher, playwright, poet, performer worth their salt would waste their time over such a trite premise? No, my cynicism was because so many works like this end with the nihilistic idea that there is no such thing. And I figured that it would probably deepen my depression but what the heck. Might as well go for broke.

The book has at its core a play entitled “Boxes” by Kenny Png and an essay by Jeremy Fernando that deals with the theme of happiness foregrounded by the play. As Jeremy explains, the problem isn’t happiness per se but the totalitarian nature of any prescription for the pursuit of happiness. The first thing Jeremy does is to question the conflation of happiness and freedom. There is, he says, a perverse freedom in the lack of responsibility of each individual subject in a totalitarian state, since all responsibility belongs to  the state. The self is free from blame from anything external to the state. Conversely there is an ironic lack of freedom in a democracy because each subject is responsible for any decision (however bad) made by the leaders they elected. Jeremy notes that according to Zizek, happiness lies in the gap between the ability to choose, and the actual consequences of real choice. The idea, therefore, is that happiness exists as possibility. Neither can we make ourselves happy nor is happiness to be found in others, but in the space of possibility between the self and the other. Perhaps this is why love is most keenly felt in yearning. Not in possessing.Perhaps also this is why the idea of freedom inspires while its reality (in whatever halfway form) is terrifying.

Peter Van De Kamp’s afterword adds a valuable distinction between the Aristotelian notion of contentment that is often mistaken as his definition of happiness, and the actual definition of happiness. The former (contentment) requires self-control. The latter (happiness) implies being favoured by fate. So it is a matter of chance. Thus any attempt to buy happiness, to make oneself happy through buying ideas or books or things, is mere superstition. The things themselves are no better than talismans. We were not born to be happy.

This book is more reassuring to me than anything I have read so far on how to BE happy. It isn’t that we can never be happy, or that there is no such thing. But that that isn’t the point of being alive. If happiness is always only a possibility, then really it is our UNhappiness that makes us human. So all this time I’ve been basically acting out a scenario of “give me happiness or give me death”. Asking it of some nameless higher power I’ve never admitted to believing in and never really felt a connection to. Now I wonder if it is the tyrannical nature of happiness – and its many advocates – that presents death as the only alternative.

The importance of being angry

Patriarchal dreams don’t die an easy death. They don’t go quietly into that good night. They have to be stomped out ruthlessly. And you have to be prepared to burn with anger.

Patriarchal dreams are dangerous. They are within us. Infused into us from the day we were born, through our childhood and into adulthood through the entrapment of community closeness. Be a good wife, we are told. Perform sacrifice and submission, we are shown. Illusions of agency are woven. The woman who is allowed to speak selectively never sees how she is silenced. Tell her she is oppressed and she will curl her lip in contempt, throwing the weight of her corralled and focused intelligence against you. She will be the strongest defender of her own oppression, reframing it as feminine power.

Patriarchal dreams are powerful. They are the reason you have no financial independence, no space for self-actualization, no air of your own to breathe. Asking for any of this means you are selfish. Expecting it makes you itchy and uncomfortable.

Patriarchal dreams do not sit well under skin that longs to be free. Be angry. Stomp hard on that which you think has made you YOU. Don’t worry. It is not you that you are killing. Be ruthless. Your patriarchal dreams do not define you. They are not you. They do not belong to you. Be angry. That is the most important thing. Be angry. Only then can you be free. Being oppressed leaves you with no emotional energy. I understand this. Anger is the only way. Pure, irrational, frightening, destructive, self-immolating anger.

Quotidian

quotidianI cut my toenails today

Bought the clippers and hacked off

A month’s worth of growth

Do you think the body waits 

For you to want to live again?

The dirt of a hundred miles

Gathered as I stumbled in the dark to find freedom

Fell away with each snip.

A month ago

Started the morning cooking my meals for the day

Counted out the blue pills and wondered if they would be enough

Had a shower. Went through the motions. Got ready to go to work. 

Skipped the moisturiser. What did it matter? 

Wherever I was going

My skin wouldn’t need protection

Started writing goodbye notes

Apologies

Not good enough

Not strong enough

But this was a month ago

Always the quotidian asserts itself.

I cut my toenails today.

And one day I will be free. 

Why leotards in gymnastics may be a more complicated issue than you think

farah_ann_abdul_hadi_balance_beam_artistic_gymnastics_sea_games_singapore_20150607_620_417_100Okay okay I apologise for the campy title of this post. But in a way, it’s not that far from what the post is about. Leotards in gymnastics ARE complicated. And most people aren’t really aware of some of the ways in which it IS a problematic issue. I’m writing this post because as a feminist, it’s interesting for me the way the debate over the Malaysian gymnast’s leotard at the 2015 SEA Games has taken shape. Just as a recap, Malaysian national gymnast Farah Ann Abdul Hadi was criticised by some of her compatriots when photographs of her competing at the games appeared online. The negative comments concerned the way in which the leotard she was wearing outlines the shape of her genitalia. Apparently, according to Islam, this is not allowed. In the latest update, the president of the Malaysian Gymnastics Federation has said that they are planning to propose to the International Gymnastics Federation that Muslim gymnasts be allowed to wear “ethical attire” during tournaments. Here is a list of links where you can read more about the issue:

http://www.themalaymailonline.com/malaysia/article/rafidah-to-farah-anns-critics-were-you-watching-gymnastics-or-the-gymnast [also the source of the photo above]

http://news.asiaone.com/news/sports/farah-ann-wore-right-attire-and-did-nation-proud

http://www.themalaysianinsider.com/malaysia/article/gymnastics-body-to-propose-ethical-attire-for-muslims

Quite a few of the responses that I have read online (unfortunately not public posts, but personal status updates on Facebook. And even if some tweets are public, I’d rather not highlight specific people on my blog without getting their prior approval) espouse a liberal stand that derides the religious fundamentalism at the root of the criticism. While asserting that such a stand is definitely one that resonates with me, I’d like to supplement that with another perspective to this debate that I think we need to consider when demanding that everyone should be more accepting of “global standards” of attire in sports. And I make this argument not in spite of being a feminist, but because of it.

I think that this furore opens the way to thinking about other forms of oppression that the leotard signifies. It is not only religion that seeks to control women’s bodies. How DID the leotard become the “global standard”? There’s a larger context in which the leotard has a regulatory signification. In a paper entitled “Acrobats, contortionists, and cute children: The promise and perversions of US women’s gymnastics”, Ann Chisholm (2002:415) [1] argues that the gymnasts

“maintain a precarious balance not only between the superhuman and the merely human but also between the superhuman and the infrahuman (freakish). In turn, they represent ideal citizenship and extraordinary femininity, and they enact the promise of modern individualised heroism and empowered femininity,  while embodying the risk of the uncivilised other (of difference) in our midst.”

The body of the female gymnast thus carries many meanings, and based on this sort an analysis, we can assume that the way in which it is dressed is far from an incidental issue, or even one that is merely about what is convenient/efficient/attractive. Taking this further into the area of how women’s bodies are disciplined in gymnastics, Natalie Barker-Ruchti and Richard Tinning (2010:246) [2] suggest that

“the degree of discipline and submissiveness required by gymnasts is key in preventing these athletes from reflecting upon themselves as individuals, their conduct, as well as their sport, and thus using their experiences as a space to invent themselves. While the gymnasts’ physical strength and kinesthetic prowess challenged traditional ideas of womanhood, they did not consciously question traditional gender stereotypes or their sport. Rather, the challenging of traditional gender ideals was a side-effect, one that the gymnasts were subtly taught to hide through regulations such as clothing prescriptions for competitions and prescribed aesthetic sequences in their routines. The clothing partially hid the gymnasts’ muscular torsos and arms and emphasized their feminine body-line.”

How empowering IS the leotard then, for women gymnasts? And what are the implications for women in sports of this being the “global standard” of attire? Before even suggesting a way of answering those questions, we need to delve even further into what the leotard signifies about how femininity is constructed in gymnastics. Barker-Ruchti (2009:45) [3] describes how

“Until the late 1960s, women’s artistic gymnastics consisted of mature women performing gentle ballet-type exercises that were emotionally expressive and graceful. During the 1970s, however, the gymnasts’ performances and bodies changed dramatically. Young and sexually undeveloped gymnasts began to execute acrobatic- and risk-driven routines that consisted of complex air-bound combinations of gymnastics elements. The trend to acrobatics emerged in the former Soviet Union. Within this specific political context, a highly competitive, ambitious and ingenious sporting atmosphere fostered the development of the acrobatic trend in the Eastern Bloc countries and later in the West.”

This analysis leads me to think that the leotard in its current form is not just about sexualization of women in sports. In a much more complex way, it is also, simultaneously, about the infantilisation of women in gymnastics. To my mind, that is not much better than the way in which religion objectifies women and portrays them as nothing more than shameful walking vaginas.

In short, the “global standard” that we see as unproblematic is just as creepy as the awful comments young Farah received.

Endnotes

[1] Chisholm, A. (2002). Acrobats, contortionists, and cute children: The promise and perversity of US women’s gymnastics. Signs, 415-450.

[2] Barker-Ruchti, N., & Tinning, R. (2010). Foucault in leotards: Corporeal discipline in women’s artistic gymnastics. Sociology of Sport Journal, 27(3), 229-250.

[3] Barker-Ruchti, N. (2009). Ballerinas and pixies: A genealogy of the changing female gymnastics body. The International Journal of the History of Sport,26(1), 45-62.