Quarantine and my old Film: Chained (2010)

It’s no surprise that we are all in self-isolation and the world is in a state of distress. Kuwait has taken some pretty harsh measures to contain the COVID-19 Virus. I am very grateful and glad that we are trying to contain it.

Meanwhile, I ended up searching for memories, old stuff, work I’ve done that I had forgotten about. I found a short film that I had written and directed back in 2010. A whole decade ago. The film was a representation of disability and societal pressures and discrimination in Kuwait. It was screened at various universities and the Kuwait Cinema Club. We were all English majors at the time and had no budget, no real experience in film-making, and pretty much just wanted to do something together we all felt was needed. We wanted to start the conversation about disability, difference, race, sex, etc.

Looking back, I am able to see that my thinking has changed drastically. The film has many problematic issues and there’s a lot that Disability Studies has helped me figure out. I was dealing with internalized fear and hatred of my own disability and that, I feel, is projected on the main character.

The film (Chained) has English Subtitles and is around 23 minutes. I am linking it here:

Fully Human

What does it mean to be fully human? I have no idea. I am still struggling with that definition. The mind and the body are so intertwined, and then there’s the complicated mess of the heart. Passion, logic, and a failing body – where do we go from there?

There are infinite ways and possibilities of mending a broken body, a broken heart, and even attempts at healing a mind gone mad.

But I am still searching for that “silver lining.” Today I discovered that it seems I must break-up with my body. We are fighting, again, and again. How can I escape it? Meditation, some friends suggest. Find another reality. Leave, disconnect. Find other ways of addressing the pain. And yes, perhaps, this does help. At least there are suggestions. A dear friend drove me around the other day only to keep me company. Fatima is an artist. She told me that she would make sure that I never have to use a boring black cane again – she would make sure it was as rebellious as I was. Fatima re-assured me that there would never be an “end” and that making adjustments, amendments, won’t mean the end of the road. She spoke to me about the importance of colors, colors everywhere. And I guess the “Silver lining” is actually a multitude of colors, you just have to look close enough.

As with gender, race, sexuality,  to understand how able-bodiedness and disability works is to understand what it is to be fully human. Perhaps even partially human. These are all categories that operate to help us label ourselves and others, but mainly, to identify as human (whatever that means).

I have called MS a random disability in the past. I would suggest that the experience of being human is fully random, also. Gender. Sexuality. Love. Lust. Attachment. Commitment. Breakups. Rejections. Nonsense and logic. All of it is random. You simply cannot trust anything around you, and even the closest part of you (that is, your body) can let go. No matter how much we attempt to find order and structure, to instill sense into a mad world, there is nothing consistent but the prevalence of randomness.

And that’s all for now.

Literary Heroism

Literature has saved my life. In more ways than one. Without literature, without my books, my theories, the world would be an abyss, and I would definitely be a bigot. I would be angry and bitter. Recently, I taught a Survey course – it covered major writers of the 15th century all the way to the 18th. Not exactly my area of interest, as I have always been more interested in the Victorian era, and gender/body studies. I also like to think of myself as a Disability Studies scholar (although labels unnerve me) – and it is difficult to claim any sort of “Academic identity.”  Literature has been the Hero of my life, all along. When all else failed, and people let go- Literature has persevered. More often than not, when people admire my perseverance, I am uncomfortable. It was never me- the real hero is Literature.

That said, one of the most rewarding joys of my life is teaching. I think I am always dancing on the inside when I talk about Shakespeare and Milton and Chaucer. When I see my students’ faces as they wonder how Cathy betrayed Heathcliff, I grin back at them. How could she have married Edgar? And why is it that women still choose to be with someone they love less? Can you love two people at the same time? No. There is always a difference in affection, in emotion. Let us analyze. And that is the beauty of literature. It’s all about this condition of being human: confused and imperfect.

But then my identity is so tied up with my disability. I still call it a disability, even though most of the time it is an invisible disability. I have been struggling with Multiple Sclerosis, a progressive neurological illness for the past twelve years. There are good days and bad days. On good days, you’d think I’m making it all up. In class, sometimes, my students turn into blurry blobs. The letters are unreadable, the pages of the book are hard to turn. Everything requires effort. I need to stretch in class, and one can only do this a few times without appearing ridiculously awkward. By the time I am home, I need to recharge for the next day. And so on. This leaves almost no room for socializing. By no means is this meant to be a complaint session- my job is a commitment I am more than happy to maintain.

Commitment in all areas of life can be scary. I understand what a lack of security entails. I do not trust tomorrow, and I am nearly certain I cannot count on my body (that is, the closest part of my ethereal self). Yet, because of this fear of the future, because of the acceptance of the unknown, I have embraced some commitments that I have today. I am committed to teaching, to learning something new as my students are learning key concepts for the first time, and the small difference I make in their lives. When a student tells me about an illness or how she is struggling with Cancer, I tell her to keep going. When she asks why, why if it is inevitable that death will approach, I stare silently before I answer. She is right. Death is inevitable. Loss is inevitable. Even in love, it begins to slowly change with time. We all change, we all “lose.” But that’s one way of looking at it. Change has other dimensions. Even in loss, there is gain. Even in change, there is a newness, a difference, an experience that brings you closer to understanding the depths of life and what it means to be human. We wonder if we can trust each  other, if we can trust life, and the naive answer would be to say “yes.” I say, it’s not necessarily a yes- it is a different type of yes. Someone I trust gave me a new equation, and this equation entails love. A love that saves, a love that heals, a love that transforms, but most importantly a love that accepts change. What is left at the end of the day but soul? Soul in everything. Your soul. Your desire for life. Your desire to try. To live, to love, to work, to discover meaning.

Lately I am struggling with change. I have learned to accommodate my weaknesses, but I am still finding new ways to work around lack. I am the International Editor of a disability journal that considers all different ways of ideal bodies, perfect states of being, health and society, sexuality, and perceptions of normalcy. And yet the irony is, I cannot provide definitions of my own identity, let alone make sense of social and cultural assumptions of disability. I am starting to accept that I may need to use a wheelchair (it is becoming increasingly difficult to walk) and I am wondering what this will do to self-esteem, autonomy and independence. But here’s what I do know: I committed myself to teaching. Whatever happens, I will do that, even if I have to roll into class one day.

And that’s all for now. 

Walk

A step. Two. Here it goes. It looks easy, doesn’t it? You’d think so.

But here it is, this heaviness that drags. This struggle of walking. It feels like walking through mud. Except you’re wearing heavy boots, and you can’t seem to carry yourself. The burden of you. This strange connection between the brain and the body. It is a strange state of being. Being a slave to this body. Who is in charge? They say the mind is superior to the body. We grow up conditioned to believe that your brain is sharp, that your body is just the follower, that you need to work on strengthening your mental skills, that the body is just a vessel. So how is it that the body is in control? It cannot be just a vessel. The body is what you see. Nobody sees your inner core, your self. What you see is what you get. The body is your Passport in life. When you are exiled from your body, do you get to go anywhere else?

And these are, as always, the random ramblings of a confused mind.

What Doesn’t Meet the Eye

Because I choose to identify as a Disability Studies scholar, I am always interested in this elusive entity of pain. Pain and suffering. Society attempts to regulate individual and collective responses to pain and its expression. I am endlessly fascinated by the politics at hand, and wonder how my life has taken an often ambiguous approach to the expression of pain.

As most of my friends and readers know, I was diagnosed with Multiple Sclerosis (MS) a bit before the age of eighteen. Today, nearly twelve years later, I am struggling on a daily basis. I don’t write to communicate constant complaints, but rather, I write for exposure of that which makes people uncomfortable: the continuing presence of pain. To communicate pain is to enter a very complex dialogue. Sometimes people pretend it’s not there. Sometimes, they call you dramatic. And sometimes they choose to ridicule it, through humor, sarcasm, or other methods of “coping” with the reality.

The reality is: it is mine. My body. So how can it be judged, dismissed, or managed? This is a long argument – and this blog remains more personal than academic. And since I believe the two are very interrelated, my post today is about judgment. People still judge a book by its cover. What you see is what you get. After all these centuries of trial and error, people still do it.

With MS, what you see is not always what you get. Yesterday I bought a car. It is a beautiful car. I worked hard for this car. But what most people don’t know is what a car actually means to me. It is a process that involves independence and autonomy. In the past, I have spent months not being able to drive. Someone who used to love me very much drove me around most of the time. Driving was not just taken for granted. Being able to feel the steering wheel, having enough energy to press the brakes, being able to coordinate movement smoothly – this is all part of the process of driving. Most of us drive without thinking of all of these details.

A driver usually drives me to work, because I try to conserve my energy until I arrive to campus. I was almost going to buy a bigger car, a car that would allow me to sit in the backseat while the driver drives. I was very sad and frustrated about this. My very good friends urged me to reconsider. Sara, who I have written about previously in the post “A Dose Called Beirut” told me that I was still young, and a lighter, smoother car might be easier to drive than a jeep. Sara’s support has been endless, simply because she is a believer. She believes in trying, in not letting go of a dream. One of my dreams this year was to buy this car, or any car really, a car that I would drive on my own. Nourah, my good friend, said the same (using her own method of support and humor). She reminded me that I could always use two cars. On bad days, the driver could drive, and on good days, even if they are just a few, I should drive. I should enjoy whatever youth and energy I still have.

As the years go by, as I grow older, I feel that my body is deteriorating. I know that the disease progress is inevitable. On some days, I struggle to walk, to get from my bedroom to the kitchen. The chronic fatigue is eating me up. And there is nothing anyone can do. When I bought a car, I did not buy it simply to buy a car. A few people criticized the choice of car, saying that Kuwait’s streets can only handle a bigger car, a jeep. But it takes more effort. It is even more difficult to get into a jeep. Again, movement. Coordination. Things that you do automatically. I think about all of these things because I am forced to. And like I always say, and try to implement: do what you want today. It’s just today, anyway.

And that’s all for now.

A Walk

There used to be a spot at the Scientific Center, a place we’d meet, and we would grab our morning coffee and I would comment that I liked it “bitter, like me.” Your reply would always be giggles and then offering me a piece of that double chocolate chip cookie, reminding me that sometimes good things are thrust upon us. That was a time when I used to struggle to walk with you, and yet I refused to lean on you. 

Last night I went for a walk, because the walking reminds me of being here. Existential crisis? I shoved my hands in my pockets, taking one step at a time, holding on to myself this time. Grounded in me. It’s starting to become very demanding, this movement, this mobility. Each step takes immense effort and I feel like I’m walking through heaps of snow. But I’m not ready to sit down yet.
Cookies might, in fact, be the best remedy. 
  

 

Random 

I lost my hearing today – only for a few hours, luckily. And I sat thinking about what it must be like to live completely deaf. One adapts. 

We are always so scared of deafness, blindness, paralysis, the deterioration of the body. But everything we are so afraid of is actually not as terrifying when it actually happens. When we lose someone we love, we think we’ll never get out of bed in the morning. When we lose one of our senses, we think we’ll never survive. 

But this survival is a concept that needs a longer post. I need to think about survival, and what it means. I wish there was a course we could all sign up for: Survival 101. And once you pass the course, you’re set for life. Then again, we’re never really set for life. Perhaps that’s the miscalculation right there. It’s all random. 

I probably should make friends with Randomness already. As an individual, I have always been so predictable, so consistent, and yet everything about my body, and how I react to it, is random and inconsistent. 

And that’s all for now