Category: Portfolio

April 2, learning to love autism.

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I’ve talked about autism many times, but I’ve never been completely honest about its complexities. I have told and retold the story of my brother’s life with ASD in order to simply send across the message that “autism exists”, but in an era where there are more ways to send messages than there are to speak, it’s easy to tell the world that something exists. I’ve been saying the wrong things the whole time.

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Jalani Morgan photography

Over the last three or four years, I’ve had the pleasure of meeting siblings of autism and finding an immediate connection. I recently introduced two women I know to each other – both of whom are now friends of mine – and these women could relate to the things I saw in my own household with almost no exception. They know the autism that no one outside of our families has ever seen.

Yes, there’s an autism that you have never seen.

Everything I talked about, they understood. They’re both the eldest sisters of young men who live with autism and more than anyone, they understand the battle of growing up trying to adapt to, understand and love the diagnosis. We never really reach an end point. We also can’t love autism 24/7, because it’s an endless learning process; it’s a challenge folded into countless brutal and beautiful experiences. When we speak of awareness, we speak about the autism no one understands except for us. We speak of the danger(s) of people thinking they know, and offering sympathy on the basis of assumptions. When I ask for awareness, I’m not talking about the seemingly functional autistic characters that we’ve seen on television.

No … I’m not talking about Rain man or I am Sam or Snow Flake, I’m trying to fight the social practice of oversimplifying the diagnosis to rocking back and forth, being good at math and minimal eye contact. I’m talking so much more than that.

I will no longer lie about how real, raw and relentless autism is.

The conversation with my friends, Sara and Faduma, wasn’t sugar coated, they know exactly what I mean when I say autism is an emotional and spiritual journey. For siblings like us, it’s a relationship that needs nurturing, faith, self-assessment and so much patience. It has everything to do with who we are as women, and even more to do with the women we are trying to become. We laughed knowing that the stories we shared helped untangle the knots that we’ve had in our chests for many years.

I think awareness needs to especially be about saying the things we are often conditioned to keep as secrets. Autism is not a secret; nothing about it should be concealed, and I mean nothing at all. In my late twenties, I’m still building the courage to tell my brother’s stories as openly and as proudly as possible, and it’s a lot of work. The autism I’ve known in my home is continuously redefining my views on love, passion, relationships and dreams. It’s slowly forcing me to change my comfort zones and it hurts. But I couldn’t be any happier about that level of growth, even if it comes with a little bit of pain. Very few siblings have what we have, and regardless of its nature, autism is something special, and it’s ours.

My brother has spent years changing me – and my brother and I don’t have conversations. We don’t share stories of our relationships, news about our jobs and we don’t argue – but we know each other with an indescribable perfection. We have a bond that doesn’t require words, in fact, our love never needed words – I’m finally understanding that it’s because our love has no questions. I stopped asking questions and I stopped wondering why, because autism is not in need of a ‘cure’ or a solution. In order for real awareness to exist, people need to stop asking ‘why’ there is autism.

My 19-year-old brother, my baby brother still eats with his hands when he feels like it, and I will never ask why. My brother uses scissors to cut his food, and I mean all his food: his hot dogs, his sandwiches, even his pasta – he won’t eat anything otherwise, he finds comfort in knowing that his food is a product of his own craft and the sound of scissors gives him appetite. Who am I to deny him that right?

My brother – like both my friends’ brothers, has run out of the house, in broad daylight and mid-evening, and in negative degree weather, with no shoes on and no destination in mind. He just ran without worries. Oh … and that’s shoeless on a good day, on a real day, he could bolt out of our home with no clothes on. And I won’t ask why, because so what if he needs to feel free for a change?

These siblings know what it means to have 5 different locks installed on our house doors, keys to our bedrooms with hiding places for our expensive things – because laptops and kitchenware have gone flying in all directions. With these ladies, the stories needed no elaboration.

My brother will hum a Christmas Carroll when he’s edgy, and we know that it’s the prequel to a meltdown, why would I ask questions when all he’s doing is singing to express his pain? It’s such an essential part of his character. My brother has never been to a fancy dinner or a family function and he hasn’t seen our extended family in almost a decade. My brother doesn’t need physical proximity, he knows exactly what he feels, and he’ll hug only when he feels like it and when he means it. He can’t lie, he can’t break hearts, and he can’t deceive.

My brother, who I thought never understood the act of giving gifts, openly embraced me when I bought him new clothes on his birthday and called him handsome, so how people assume that those living with autism don’t understand words is beyond me.

It isn’t true, they understand everything, and they know exactly what they need.

Yes, they can hear you, they can feel your energy and they do get offended when you speak to them like 4-year-olds when they’re teenagers. They can tell when you’re preventing them from being themselves. The awareness we need is that of diversity and difference, we don’t all have the same process of self-expression.

My brother will turn the lights at home on and off for 30 minutes non stop because it’s comforting. In our home, we have the Sponge Bob Squarepants, Super Mario Bros. and the Backyardigans on repeat from 1:39 seconds over and over and over … sometimes for as long as half a day, and we all have the songs memorized.

In my house, we throw a celebration when my 19-year-old brother says all of our names, slowly and with hesitation because he’s really really trying and he wants us to clap for him. Autism isn’t always about words, but when we have that moment of triumph, we love it.

My brother is also a badass. Yeah, he’s a badass. He has single-handedly shut down a busy Toronto highway at 7 p.m. and was followed by two police cars simply because no one with him understood why he was kicking and screaming in the van. My non-verbal brother was pinned down by his workers on the ground while waiting for the cops to come and “resolve the issue” – I’m still not sure what the issue was.

My brother’s worker came to my parents’ home yelling that my brother took a leak in her car while she was driving him around, and I didn’t understand why pee was such a problem. My brother is a visionary: where people see seats, my brother sees the opportunity for urinary release. Seriously, she should have been told that autism is as unique as it is unpredictable. Plus, plastic seat covers are always on sale at Walmart.

But it’s easy for us to hysterically laugh at all of this now, autism hasn’t always been funny. Sometimes the tears were not those of careless laughter. My brother is the teenager who tried to run out of the hospital as he was suffering from a stroke because he didn’t care that half his body wasn’t moving. It didn’t matter. He wanted to run again, he wanted to fight the weakness away. He doesn’t have the patience for pity.

Anyone who lives around autism and who truly knows its severity, lives on the hope that they will one day no longer have to pretend to live like a nuclear family.

In my home, we can break out into dance at 9 a.m. because my brother is playing music out loud at breakfast time. I carry my almost 20-year-old brother on my back and chase him around the house in a Scream mask for no reason. We don’t take life seriously all the time. But I honestly don’t know how to believe in ‘normal’ anymore, I don’t think I want anything to do with the idea.

I don’t want the autism community to be a product of preconceived notions and limitations, or for autism to be the outcome of cultural definitions or a receiver of sympathy. The only ones who can try to define it are those who know it, not those who observe if from a distance. As families of autism, we re-understand it daily, and we haven’t gotten over how difficult living around it can be.

I don’t think the knots in our chests will ever really go away.

On some days, when my brother is feeling sick or being fussy, I could give this 19-year-old a bath without batting an eye. I can talk about my brother on a first date because I know it’s real and incredible and difficult and it has everything to do with me, and I now know that difficult can be beautiful too, but I live with a constant fear in my gut because I know some relationships aren’t made for that challenge.

Siblings of autism can recognize someone who lives with it in a millisecond, we know how their eyes speak, we’ll recognize that unwarranted smirk anywhere. We know that a man in his 30s holding his mother’s hand in public, wearing an oversize jacket and periodically grabbing his groin is not harming anyone.

We know the bounce in their steps, we know the head lean and we know those dancing hands way too well, and it’s still not simple. I don’t think I like anything simple anymore; I love songs on repeat, I can handle a day out of sync, I love oversize clothing. Autism is a part of my own being too. The real awareness needed is the understanding that autism will never look like anything familiar. The truth about autism is that it’s something new everyday; a new quirk, a new gesture, a new song, a bigger smile.
For us, it’s a love without limits, and it’s a story without secrets.

I love someone with autism, and I love them better than words. I love autism because it makes a better me every day. It forces me to constantly discover. I love it as shamelessly, as openly and as freely as possible

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On filling emotional void(s) through narrative: my cultural/social experience as a first time filmmaker.

Marwa Siam1 Comment

Nearly two years ago – at a time where life couldn’t be any more confusing and where my on-again, off-again millennial crisis was reaching its peak – I made the decision to go back to school and pursue filmmaking. I wasn’t hesitant about my own capability to tell stories as much as  I was worried about the concept of taking risks. I knew deep down that almost everything in this world was built through risk-taking, but I felt paralyzed whenever I took any decision pertaining to my own future.

I knew two things needed to happen before I took that step: I had to be mentally and technically equipped to turn a story constructed in the depths of my imagination into a real motion picture, and I had to defeat the traditionalist subconscious demons that constantly told me I wasn’t ready (for anything for that matter). All I really had in me was an idea and a semi-sustainable dream.

Today, one year and nine months after getting into graduate school and two months after getting my MA and making a short film, I can safely say that taking risks and acting on impulse is the recipe for my happiness. This whirlwind of an academic year came to an abrupt, but well-received end, but in order to rationalize what happened in the past 20 months and really build a vision for what’s to come, I had to write this – and get a number of things off my chest.

We tell stories to make sense of things and heal – we really do. I knew that my film would be about ASD, I knew that I wanted to tell the story of my brother’s life with Autism Spectrum Disorder and especially to reflect my family’s experience(s) for the past 19 years. I wanted one of my two brothers to play his younger sibling, I wanted a passionate woman to portray the pain and challenge(s) of a mother raising a son who is non-verbal, and I wanted the story to take place in Toronto. I wasn’t willing to change my vision or compromise my beliefs. The story and family were really mine, and the film – whether I admit it openly or not – was my own source of healing. There’s a huge misconception about film makers, it’s a poorly-supported notion that they are demanding people who make films without always being emotionally invested it them. That isn’t true. I believe filmmakers are storms of emotion, that they’re vulnerable enough to tell stories that matter, and I think that’s perfectly fine. The emotional attachment I developed for people, moments and places is something from which I can never recover. To be quite honest – making my first film was the best emotional roller coaster ride I could have taken.

Doing what scares you the most tells you who you are. I thought that I wasn’t established enough to learn about the film industry, I also believed that I was too old to try something new and that I was slowing down my own progress by becoming someone/something I dreamt about. I lived through cycles of challenging  cultural beliefs – especially in the context of my own family: I had to try to express to them that passion is something that actually counts. I had to prove to them that the safe routes aren’t exactly solutions – that they’re just evasive ways for people who are too afraid to fail. I really don’t know how people live trying to dodge failure. This experience left no room for my own ego, it made me comfortable with the idea of failing, and it made me fall in love with the idea of trying (again).

Your well being/health matters. All the time.
My film screening is scheduled for early 2016. I had to push many things forward after the DOP of my production took her own life on September 29th, a day before my film screening in school. Although I had my own minor battles with stress and anxiety which are not comparable to her struggles, I now realize that we live in a society where we don’t talk about emotional well-being enough. We have very little courage when it comes to understanding, seeing, and actually believing in depression. Mental health is a necessary conversation, and depression is very real, I learned that the stigma around it could not have been more present. I had the honour and pleasure to work with this young woman whom I later found out was suffering immensely and who was unable to express her own pain. I learned that making films (or any creative work that matters) hurts as much as it heals, I learned that people are very fragile and that the idea of giving up and losing hope doesn’t apply to two people in the same manner or on the same scale. It’s really difficult to lose someone you’ve built a rapport with, and it’s crucial to acknowledge and reiterate the importance of constantly caring for our emotional well being. No one has it together, no one.

Today, I don’t give up as easily. I’m almost 30 and I’m still eager to learn, screw up and change. I don’t want to hurt people because I know we all ache differently. One of the many purposes of my film was to bridge the narrative gap between disability and race, two concepts that I know are miles apart in contemporary North American cinema. I wanted to work with women filmmakers – and I did. I had an incredibly diverse cast, and so many intelligent women/men took part in my project. I wanted to see a woman of colour star in a Toronto production – and I did. I  recently spent an evening with a friend who is very dear to my heart and I was – as  usual – conflicted about a number of things in life. I looked up at her wall and saw a C.S. Lewis line that I knew but didn’t repeat enough in my own mind. I needed to see it then more than ever.

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Regardless of how my film is received, regardless of how loved or hated it will be, I cannot wait to take risks again. I cannot wait to fail, fall and try again. 

 

 

m.

 

 

 

 

Tales of Toronto: Sid Naidu

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Periodically, I will feature people and places that I believe have played a part in making this city magnificent. Sid Naidu is the first one.

I remember being extremely lost on my first week of university – that was TEN years ago.
For many reasons, I felt like I wouldn’t belong in a place that I told was made for a special class of people. I, like thousands of others, have experienced a sense of unpreparedness for higher education, because of the financial privilege it requires, because intellect is often a racially defined concept and because we are taught that success is a form of superiority. Failure is unfortunately a sidelined concept in life. The truth is, many of us don’t fail enough.

During my first month of school, all these preconceived notions of university started being redefined, mainly because I met  Sid Naidu. I remember being at Ryerson’s cafeteria/hub space and seeing Sid handing out flyers for a hip-hop event at the pub and I thought  to myself:

“Hip-hop? At a university?”

I didn’t think there was room for anything extracurricular, let alone anything that interested me. I met specific people who told me where they came from, Sid being one of them, and who made this new chapter feel less foreign to me.

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What Sid was doing was making the university a space for people, not just special people, not just seemingly smart people, not just the obedient ones and not just those who were looking for praise. He was fighting exclusivity and making sure that not one person was more deserving of being there than the other.

Sid told me that he was a second-year student in Arts and Contemporary Sciences and was hosting what he described as a “revolutionary” event, and told me that I should tell all my friends about it. While revolutionary may have been an adjectival term then, it’s now built into everything Sid is. He’s a Scarborough kid, which meant that back then he was commuter, which also meant that he understood that the university dynamics needed to change (not everyone there came from luxurious places) and that post-secondary elitism it all its forms needed to go. He believed in changing anything that didn’t feel right. He wore a ponytail and a baseball hat, and despite how strange it sounds to say it now, back then you could count how many men walked around a university looking that different and feeling 100% comfortable. He explained that “because of how racialized we were, we couldn’t look ambitious.” Cultural diversity may be a Toronto highlight today, but those who are in their late twenties know that racial diversity made its way into academia much later in Toronto’s history.

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Immigrants’ children know this: they live with a constant pressure to succeed, in order to compensate their parents’ hard work, yes, but also to challenge the notion that immigration is synonym to social inferiority. It isn’t, and one by one, second generation immigrants have shattered the idea that being sons/daughters of taxi drivers, caretakers, construction workers, store clerks and cooks is a limit, and instead proved that it’s a motivation folded into pressure.

“I was raised with the idea that race classified the world”, from Bahrain to Canada, Sid looked for a sense of belonging and had to build it from experience. Some east Indian, twisted into some Arab culture, flipped into some Scarborough … but the picture is still being pieced together. Sid’s search for self is far from over. For him, getting lost in the search is a lesson, not a challenge.

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Being the son of Indian parents and having had a culturally and religiously mixed childhood means that Sid Naidu doesn’t believe in simplicity, in limits or in anything conventional for that matter. He founded the Urban Hip Hop Union, which grew to be a hub for the music, culture and dance enthusiasts. He ran for the students’ union and left a pretty heavy imprint at that school. While many people settle now, and look for ways to be stable and reasons to be content, Sid doesn’t, he believes in the power of telling stories, so his art shapes his vision, he believes in the magic of connecting (those who know him, know he loves that word), so he’s on the go, all the time. He doesn’t believe in comfort zones. He had heard – many times – that he wasn’t deserving of success so he now molds it with his own definitions. And because he’s story teller, he makes the success story his own.

Fear and fearlessness in 2015

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… I mean fear in a good way.

Happy new year!

It hasn’t completely sunk in that it’s a new year – partly because I’ve done nothing but recover from a 14-day trip and mostly because 2014 came and left too quickly. Also, because a new year is not the biggest deal to me. I know we all fall into the resolution trap annually – many of which we don’t stick to – but that doesn’t mean that they’re not worth having. I know there are hundreds of posts and statuses announcing how incredibly amazing the past year has been and how much people are looking forward to 2015, but this post is about something a little different. 2014 didn’t end as brightly as I would have hoped. Two of my closest family friends have fallen ill this past year and if I can hope for one thing in 2015, it would be their physical and emotional recovery.

I spent the beginning of my Christmas vacation in Paris and the rest of it in Cairo. I left Toronto with last-minute travel plans and left behind a load of things desperately waiting to be finished (scripts, interviews, applications, etc.) and my procrastination has come back to drag me from the eyeballs. Despite being congested and sick for most of the trip, I was able to find some time to enjoy it and see family/friends I hadn’t seen in ages, but I have to admit: I was dying to get back to Toronto. Never have I ever look forward to coming home so badly.

I mean it when I say that 2014 has been incredible in many ways, even the problems I had rolled around in style. I learned that being confused is good for you (at least it means you’re thinking), that overt and aggressive honesty is necessary and that getting old is an amazing thing when you’re content. This is has also been the year of a severe identity crisis (which is still at its peak, by the way).

I spent a few days in Paris with my friend D, who so kindly put up with my chronic coughs, sniffles and constant nose-blowing and who knew Paris a little better than I did. It’s not a winter destination, I’ve learned that the hard way. The temperatures sat between 1 and 4 degrees with strong winds so walking around was a pilgrimage. However, I still got to see things I wanted to see, reconnect with people I met in Toronto and enjoy my time there.

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I also met some wonderful people on the way to Egypt from France. While on a connecting flight from Istanbul to Cairo, I had the pleasure of meeting Imran H., a hilarious and chatty British dude who did a stellar job of entertaining me during what was supposed to be my two-hour power nap. It was a nap worth skipping that’s for sure. I thoroughly enjoyed the pause-proof conversation with my raspy voice. A virtual shout out to him is in order. He and his friends were taking a Christmas trip through Cairo, Amman, Jerusalem and Bethlehem.

Egypt, on the other hand, was a homework trip that I had to find ways to enjoy.
By homework I mean that I had to go there immediately for multiple reasons (not for tourism) which included a cousin’s wedding, visiting my grandmother and making time for reunions with family members who were never in Cairo at the same time as me. I also collided face first with a reality that I was secretly aware of but never admitted, Egypt is far from home. It’s a heartbreaking truth to some, but it’s a truth I am very comfortable with. I met with some family friends who left Canada for Egypt and who openly expressed their discomfort with living there. I didn’t even need to completely relocate like them to feel that way, just landing at the airport I was forced to deal with a bitter agent who decided to scold me for forgetting to renew my Egyptian passport. A dose of foul sarcasm was not the nicest entry into the territory.

Two days after my arrival, my siblings, my cousin and I took a short trip to Hurghada, a coastal resort Southeast of Cairo. December is a little before peak tourism season so the resort was calm enough to keep me sane. It was a nice hotel with a gorgeous view of the red sea. However, the walking strip was limited and the party scene (which is already not my scene) is pretty lousy – I highly advise against Little Buddha Hurghada, everything from the security to the service is downright terrible.

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Returning to Cairo meant diving right into family visits, wedding plans, and catching up with hundreds of people. I ended up attempting to squeeze too much into the 10 days that I missed out on meeting up with a number of people that I needed to see (Sara, Mary, Yomna, Sundus and Hager: I sincerely apologize). It’s extremely difficult to move around solo. I don’t know directions, I can’t help taxi drivers with shortcuts, I am not in the know when it comes to places to go and I apparently don’t sound like I’ve lived in Egypt long enough. There’s a huge difference between traveling for leisure and traveling for obligation. When someone takes a trip abroad, they tend to be comfortable knowing they’re not from that place and exploring it however they want. When someone goes to a place she/he is taught to consider home and isn’t able to adapt (especially as an adult), they feel like outsiders among people who look just like them, so it’s almost like not being understood and not being welcomed either. It’s strange and at times disheartening. Cairo is a terrific place to live if you understand it, but a very difficult place to get used to. I don’t understand the traditions, I miss the punchlines, I can’t communicate like I live there: too polite means you’re foreign, too vocal means rowdy and too friendly means some kind of vested interest. You’re extra considerate with family (never say no), too careful with family friends, too conscious of what you wear, too controlled in social situations and too alert in public. Staring is a national language: you can’t tell if you’re doing something wrong of if you’ve got something on your face. At 28, it’s challenging to change everything from the tone of your voice to your body language and to second guess things that you’re comfortable doing and saying. This is a culture I will never be familiar with and there’s nothing wrong with that. I finally realized why home is more about comfort and less about ethnic similarities and language. The last thing I should care about is looking like everyone around me.

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As I approach my 28th birthday, I don’t get discouraged by age (I don’t know why anyone does to be honest), I just realize I have to stop finding reasons to conform with things that don’t feel right to me and not to look for meaning in things I don’t need to understand. This may sound very abstract now, but I hope to spend the next year making sense of it.

If starting this year a little scared means finishing it off with a better understanding of who I am, then I am starting it right. I also can’t help but be a little nervous about what’s to come: collaborating with my brother on one of the most important projects of my life, re-starting writing after shying away from it for some time, saying/showing my ideas while doing things with less hesitation – yeah, this year can’t be any more frightening and I am pretty sure that’s a good thing. Getting older means totally shafting the comfort zone and doing things as organically and as honestly as possible, you sit less on the fence, you don’t dance around things, you sort of just do them regret-free. Along with being too old for a lot of shit, you get pretty content with what you have, very enthusiastic about what you want, extremely satisfied with making mistakes and insanely nervous about change. You demand less and hope a lot more. Happy beginnings!

m.

The Global Dialogue, episode 2. International development week

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Episode 2 of 5 of The Global Dialogue podcast.

Hosted by my colleague Trinh Theresa Do and myself.

The Global Dialogue – The New Delhi gang rape trial

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The Global Dialogue is a weekly podcast that is hosted/directed by my collegue Trinh Theresa Do and myself.  This week’s topic can’t be discussed enough, it’s worth every thought, every debate and every milisecond of anger.

Interview with Abdul Snobar

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I’ve recently had the chance to interview Abdul Snobar, manager of undergraduate student relations at Ryerson University. He, along with the members of RIEL commerce, went to Kenya in order to put together a one of a kind project that would help financially benefit the communities in the village of Dago. This interview also helped clarify the misconceptions I personally had about the impacts of commerce on socioeconomic issues.

*Much thanks to the team that helped put this together –Wesley Murray, Ché Pereira and Brian Hastings.

And I will stress that you check out Wesley Murray’s blog, he’s a very gifted writer, producer and editor. I  was privileged to meet him on my first week of Journalism school and a person whom I  had the pleasure to work with for a whole semester. He’s got some major charm as well, and I must admit that his professionalism and maturity are things I look up to, not too many people can can be quiet and hilarious (and awesome) at the same time.