Meet Faduma (@FadumaMohamedS). She's a spoken word poet and storyteller, so it's only natural for her to beautifully articulate autism beyond the usual six question interview. In her writing, we learn about her brother Bilal. And we get a raw glimpse at what inspires her year long challenge to spread awareness about autism.
I have yet to see someone not grin when my brother laughs. When he is in his state of bliss, it's hard to believe that he can feel anything else but bliss. My youngest brother lives with autism. He's nonverbal and has a developmental disability. But above all, he's my hero.
My brother has challenges being able to do simple things that we (neurotypical people) take for granted: like being able to ask 'where is the bathroom?' or being able to write a sentence.
But he can write his name! I remember how loud my family cheered when he first learned how to spell out: B I L A L.
My hero's name is Bilal, but for the most part, we call him Billy.
Billy loves swimming. He even taught himself how to tread in the deep end. He's really good at puzzles. He loves watching trains, wearing sunglasses and rocking watches. He has a thing for watching Ellen interviewing Rihanna or Nicki Minaj - over and over and over and over again.
As I write to you about the guy that changed my life, I'm filled with pride. But it wasn't always like this.
There was a pivotal point where my brother's autism gradually became more than just difficult. It was taxing. It was energy depleting. It was tears. It was not having enough money to buy food.
There were times where he would get so angry that I had to lock myself in the room or in the bathroom. There came a point where the only way my brother knew how to express his frustration of not being able to speak, not being able to control how environmental triggers are affecting him - was through aggression. That's just how he was able to let it all out. And now I don't blame him. Because I finally understand - with my heart instead of with my head. But growing up, I blamed him for everything. He was the reason my life was far from normal. (Whatever that means).
My mom used to always say, "you can't get angry with him."
I don't agree with her. I think it's okay to be angry. I just don't think it's okay to allow the anger to hold you. Control you. Overwhelm you. Cloud you from the truth: that autism comes with an active volcano, but behind the volcano, there's a person. For me, that person was swimming in the ocean with his sunglasses on.
During the writing process of my play, "Oughtism", I had to face a lot of feelings that I ignored. Particularly the anger and blame. It was a very sensitive time for my family and I because Billy was transitioning to live in a group home.
Sometimes, space is needed for love to grow. Our home couldn't cater to his autism. When we would visit, he would still hit. He would still scream. Break things. And it still would hurt. It never stops hurting. It requires a deeper breath. It requires siblings, parents and caregivers to brush their shoulders off. And remember the love. Through the volcano, remember the love.
When he calms down, and he's in our arms, holding our hands, I remember my brother who would laugh horrendously to Bugs Bunny and Tweety Show. My baby brother, who isn't a baby anymore. I remember when it was easy.
My activism for autism started with myself. I had to accept my brother's autism and not view him as a burden. I started with the play but it took my an entirely new shape with #OughtTheBox.
Since October 29, 2015, I've been carrying a large painted Tupperware box , everywhere that I go, for autism awareness. It's used as an ice breaker. I carry it hoping a stranger asks me about the box, so that I could tell them about autism.
I tell them about how the public treats me and the box, with a strong willingness to help. And I tell them about the days I would be out in public with Billy, and he would be having a meltdown, the public would react with an unnerving amount of fear.
My year long challenge of spreading awareness about autism is to stand up for my brother, for all the years I didn't stand up for him. I know deep within my heart that once we are more familiar, we are less fearful. When we understand, we are more compassionate. When we are relieved of fear, we are rejoiced with love.