On Sickness and Shame

For as long as I could remember, I was acutely aware that in the society I grew up, people were ranked into different classes. Even as a toddler I knew this. As if this manufactured hierarchy was part and parcel of my genetic make-up. Perhaps, I didn’t know where all the pieces would fit, but I knew that the tangram existed, and that the social order would then gently guide my hand to put the pieces where they belong. First the major pieces; adults, children, women, men, mothers, fathers, religion. Then come the smaller pieces with attributes relating to; race, colour, wealth, education and health. Then growing into infinite complexity as the pieces melted into each other creating an amalgam of interweaving but distinct layers that classified individuals. The puzzle would grow, morphing into a multi-dimensional spectrum of endless possibilities. A unique social formula unfathomable for the uninitiated.

In the space of the jigsaw where health is concerned, the social order had hardly been frugal in giving its instructions. The hints sometimes were relatively subtle, seemingly innocuous or relating to common expressions. Such was the first time I saw a man in a wheelchair.

A passer-by would exclaim to him “Salamat brother! What’s wrong with you? I hope evil has not touched you”. The man in the wheelchair proceeded to explain that he is disabled, and that he had been like this since birth. The passer-by then lets out a heavy sigh and says “I pray to god that he cures you from your predicament”.  The pieces move. Wheelchair . . . Wrong . . . Touched by evil.

Other times, the intimations would be direct and undeniable . . .

At a female gathering at a relative’s house, I remember about a dozen abaya cladded women had congregated in the corner of a shoddily painted lime green room. Sat on a salmon pink carpet, they resembled black seeds of varying sizes and shapes strewn on the flesh of a watermelon. The air was musty and thick with the smoke emanating from a traditional hookah-like pipe which was popular with older women during that time.

I remember I grabbed the tail of my mother’s abaya, put it over my head for either shelter or warmth, or perhaps just to pretend I was batman for a bit as I sometimes did. I would muse at how life looked strange and forlorn through this streaky black filter.

From my darkened world, I heard one woman, who was considering a prospective suitor for her daughter. “Over my dead body, they say he is a carrier of sickle-cell, what makes him think he’s good enough for us?!” She asked rhetorically. A cacophony of approving murmurs came from the women surrounding her in reply.

Another woman was clenching a small cup of coffee. She downs what remains of it hurriedly in a single swift motion — the same motion I would come to associate later in life with the swigging of alcohol shots. She then twists the cup from side-to-side gesturing to the younger women refilling the beverages that she has had enough, before replying “God forbid it! the last thing you need is to be inconvenienced with sickly grandchildren” to yet more murmurs of agreement from the others.

It is in gatherings like these that the nuances of the social order are maintained. These women had not created it, nevertheless, they are its disseminators, its protectors and its tireless tinkerers. While men fully subscribed to these ideas, and even enforced them at home. They would seldom talk about them at their gatherings, as if it was beneath them. In public at least, They wore a cloak of righteousness that would allow them to assert statements such as “God does not distinguish between men except through their virtue” while behaving in a way completely contrary to such statements. Women somehow offered a convenient solution for this dichotomy, allowing generations to be raised based on what man wants, while man continues to preach on what god wants. Of course, the internet would come to change this. Their righteousness now preserved by anonymity, providing license and opportunity for anyone to viciously preserve the order by any means possible.

In the playground of our school, which was basically a dusty concrete outdoors football pitch, covered by a roof of rusty corrugated steel. A boy permanently on crutches due to brittle bone disease (OI) was exclusively called ‘the cripple’. He was to be avoided at all costs. Partly, in fear of harming him unintentionally, but mostly because he was different.  The pieces move again. Disease . . . Sickly grandchildren . . . Rejection . . . Exclusion. I would be bombarded so thoroughly with these social directives, until all the pieces had shifted.

It was no surprise that when I was diagnosed with Crohn’s Disease,  I decided to keep this a secret from my friends and extended family. My mother knowing how cruel society can be, would come to aid me in this endeavour.

“It’s better this way. They don’t need to know. If one day you want to ask a girl’s hand in marriage, at least this won’t be an issue” She claimed. Saying ‘this’ in a way to signal that the vow of secrecy had already commenced and the charade had started.

As a 10-year-old boy, I was of course more interested in acquiring the latest video game in the Final Fantasy saga, than I was ever in acquiring a wife — to both my delight and my mother’s chagrin, this is still the case 17 years later. Let alone with the deception she was entailing we apply to secure such an engagement. However, I was committed to being normal, or at least as normal as I could be . . . To belong.

I would later come to learn another and perhaps darker reason for her encouragement to keep this under wraps. After all, having ill and defective offspring was surely to be the ultimate indictment for women in a society that sees them primarily as vessels for procreation. Many believed that you had to have done something so inexplicably wretched, to incur the wrath of god in such a manner.

However, I would ultimately be exposed. Usually when it got so bad that I had to be hospitalised. I would be so angry and ashamed of myself. That I might have done something to trigger it. That I hadn’t managed to cope with the pain, or at the very least find a way to conceal it as I always had. That my absence would be noticeable to everyone, and that I would be exposed for the imposter I really was. A fraud who was taking a place in the hierarchy of men that wasn’t his to take.

The first time this happened, I felt my head was coming to a boil, filling with hot mist until it found a way to escape, erupting and flooding the crevices of my expressionless face with streams of warm tears.

Someone said — as someone would always say when any boy past infancy cries — with a placating tone laced with disgust: “Why are you crying? What happened? We thought you’d become a man by now . . . No, It’s not right. Be a man. People are watching. Shame on you . . . Shame”.

When I graduated from high school, I was accepted to do a bachelor’s degree at UCL. I then applied to a highly competitive scholarship program, sponsored by one of the largest employers in Saudi Arabia.  After a few tests, my scores got me accepted in the first wave of recruits. This was one of the most prestigious scholarships you could get into at the time.

I spent most of the summer occupied with induction sessions, filling forms, medical check-ups, and trying to persuade them to agree to send me to UCL as opposed to undertaking a preparatory year before university, as normally was the case. They had eventually capitulated to this.

However, my fall from grace couldn’t be more swift, when a couple of weeks before I left for London — almost as a parting salvo from a country determined to put me in my place — they said they had rescinded their offer of scholarship due to my medical ‘situation’.

Part of me anticipated this. After all, how could someone so damaged, achieve a status the best in society sought after. This ran contrary to dictates of the social order. I had written on one of the medical forms about my condition. I didn’t want start my career with a lie. This is where I took my stand I thought. Two words out of the many thousands I had written in exams, applications and forms were all it took for the house of cards to unravel.

While I accepted my fate quickly and looked forward to making alternative arrangements. My father had protested. A pragmatic man, he knew he wouldn’t get anywhere questioning the ethics or legality of their decision. Instead he aimed to convince them that my condition was a minor one. That they needn’t be concerned by it, and that my merit would more than compensate for any shortcomings resulting from it.

He spoke to them armed with a letter from my doctor stating his medical opinion that I should have no issues doing the job, and a letter from my school stating my absence record. He had asked them to reconsider based on the fact that I would save them at least 2 years of tuition and expenses relative to the other candidates, as I already had been accepted into a 3-year course.

They refused his request, explaining that “those are the rules”, that “it doesn’t matter how clever you are, if you’re too ill to work” and that “If we accepted him we’d have to accept all the others”.

And there were many others. Some with diabetes, others obese, one with asthma . . . It is as if we entered this process as men with health issues, and emerged from it wholly different creatures, altogether lacking the basic traits to be productive members of society.

I had noticed that out of the people who had been rejected on medical grounds, none had particularly life threatening or particularly difficult to manage conditions. I couldn’t help but be saddened by the thought that people with such conditions, might have been condemned to failure and obscurity at yet an earlier stage of their life, based on imposed perceptions rather than innate abilities.

There were a few recruits with moderate colour blindness who got accepted on the ludicrous condition that they would only do administrative and financial degrees as opposed to engineering and scientific ones.

The health of our female counterparts on the other hand, was less thoroughly scrutinised. A rare boon in society so heavily rigged against them, only born out of the sexist expectation that their jobs will be less rigorous and that they wouldn’t be allowed to do field work. I was nevertheless glad that they hadn’t endured more than their already unbearable share of discrimination.

In Saudi Arabia, the contempt for anyone who strays beyond the narrow boundaries of normalcy is institutionalised. When it comes to health, a lack of awareness, the prevalence of misconceptions and the importance placed on genetic purity and procreation has shrouded many health issues with thick stigma and shame. This can only be addressed as part of a comprehensive social change, challenging the roles of men, women and the family unit. And a legal framework to end discrimination based on health.

While the labour law has some scant provisions to protect disabled workers, these do not go far enough, are not adequately enforced and do not offer any protections for those with health conditions that do not qualify as a disability.

I was fortunate to have parents who could fund me until I could receive a different scholarship. Others didn’t have university acceptances and weren’t as lucky. They had to wait another year to apply for programs as most of them were filled by that point. The next time they would be sure to take more precautions to conceal their health issues should those be brought into question.

At university, I continued trying to be ‘normal’, at the cost of somewhat alienating myself in the process. After graduating, I applied for a job in the UK. When I was offered the role, I received yet another medical history form to fill. The choice for me was clear. I wrote exactly what I had written in the first one I received all those years ago. I started work the following week.

It was only at this point that I started imagining a life for myself that wouldn’t be solely determined by a disease. It started a long journey of acceptance that would ultimately lead to me writing this. It is perhaps ironic that now that I am emotionally best equipped to deal with my condition, that it doesn’t seem to cause me as much trouble. However, this gave me the reprieve needed to find that little boy beneath the dark veils and guide him to rearrange the pieces of the tangram into shapes that are more tolerant, kind and loving to others, but more importantly to himself.

If you liked this essay check out asaudiabroad’s brilliant account On Blood and Shame which explores shame and coming of age in Saudi Arabia of a young girl through the lens of the experience of a first period.

3 thoughts on “On Sickness and Shame

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  1. Wow. This was a wonderful essay to read. Being UK born and bred, I admit to being ignorant to the social expectations of Saudi. This piece really opened my eyes – well written, insightful and respectful. You’ve touched this one reader’s heart with your words. I hope you write more soon!

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