Features, Main Story

The radical existence of my neurodivergent sibling

My brother is my favorite person. There is no one in all of the world that loves me as he does. He is the reason I’m an empath and have learned to hold space for all kinds of humanity, but in a world that cannot define his existence through their oppressive and limiting language, they label him a liability.

There is a disconnect due to society being unable to see disability issues as a human issue. To them, it is an alien experience. I don’t find him “special.” He is still my brother and I want him to have an unapologetic existence, to not have to preface his whole life.

At the start of our journey to understanding my brother’s intellectual disability, society left my parents and I in the hands of endless frustration and confusion. Our attempts to integrate him into the world were met with rejection, shaming, and isolation. This, in an ironic way, created a bubble into which we receded, learning to protect him and ourselves from the preconceptions of what a human being should be.

This bubble, that most families with persons of disabilities experience, protected my innocence and now, as an adult, I am fundamentally able to understand the spectrum of our own cruelties and the ways in which we have built systems against the most vulnerable.

The challenges my brother experiences are the result of a society that doesn’t know how to hold space for what we don’t recognize or understand. Systematic oppression cannot be overcome when it has been the way of life.

According to the World Health Organization (WHO), 11 percent of the population in the UAE and Jordan live with a disability. `In Egypt, 35 percent of the population is affected by disability, according to Disabilityin.org, while in Lebanon, an estimated 10-15 percent of the population has physical, sensory, intellectual, or mental disabilities.

It is now more urgent than ever to unlearn unconscious bias in order to adapt to the different ways in which humanity exists in the world. The 2018 “Disability in the Arab Region” report released by the United Nations Economic and Social Commission for Western Asia (ESCWA) states that countries in the region report relatively low prevalence of disability due to the survey questions containing words such as “disabled.”

The stigma around the word “disability” has led to only the most severe cases being recorded. It is a silent struggle that individuals with disabilities and their families often choose not to discuss openly.

GROWING UP WITH A NEURODIVERGENT SIBLING

I was an only child until I was 10, spoiled rotten with all of my parent’s attention. Then suddenly, there was my brother squirming in my mother’s arms, making the extended family croon and laugh, leaving me in the corner of the room. Very early on I took on the task of feeling like a burden – I didn’t ask for anything unless it was absolutely needed and urgent.

He was loving, loud, angry and a boy. He did most things as he was supposed to: sat up, crawled, threw things, bit things, stood up, and learned to walk. Then he started running at a speed and with a fit of anger almost too fast for either my parents or I to catch. This, I think, is when I began to feel the overwhelming weight of simply being.

Going to high school I often hid my forearms because when he got angry, he pulled off my skin with his tiny nails, leaving violet half-moons on my arms. His energy came out as livid anger because he did not know how to communicate what he needed, and all we could do was hold him until he tired himself from kicking and screaming.

Do kids act like this at the age of 1 then 2 then 5? He was tired, we were exhausted. There was no one around to explain what was going on, and so my father helplessly had to turn to Google. “What is wrong with my child? My boy?”

Family outings rarely ever happened because he would run off the second we did something that made him upset, like deny him a shiny new car. He collected Hot Wheels like postage stamps and we collected judgmental stares from mall-goers like we were abusers. This is when the shame began.

He was my favorite person. Loving, loud, angry, a boy, neurodivergent.

At the age of 6, he was finally diagnosed with high functioning autism and ADHD, a combination that, for him, meant he would always cognitively function at an age significantly lower than his actual age. While it was a relief to identify what was going on, this also meant an intense amount of attention diverted towards an attempt to “fix” him.

People view disability as something that must or can be fixed, but what they fail to focus on is the real issue that needs fixing – the lack of accessibility in all forms. The shame, the marginalization, the lack of opportunity that comes with an already challenging life. This is compounded by the lack of support and acceptance for the families.

A 2018 WHO report suggests that persons with disabilities are more likely to be income poor, while other studies point to higher poverty rates among persons with disabilities.

I remember trying to do my homework but being frustrated with the trail of cars he would line up one after the other on tables and over my books and all over the floor. He would crash them together over his head, mimicking the loud noise between his lips. I needed help with math so badly but we could barely scrape together money for his therapy.

UNDERSTANDING SOCIETAL BARRIERS

He was our main priority, as he should be, but I watched my parents deteriorating physically and mentally over the years, struggling to stay afloat. We took him to therapy and agreed to give him medication, eventually deciding to enroll him in my school for kindergarten. This is an experience neither my parents or I speak about.

While there is now at least a semblance of inclusivity in some schools, not too long ago, educational institutions and the people that manage them lacked the understanding or willingness to grasp that this was a child that simply needed to be understood. A child that needed to be given the freedom to grow into himself – not tied to a chair with the alphabet forced down his throat.

My brother, clueless to the hostile environment he was about to enter, was ecstatic about this new development in his life and the prospect of making new friends. Even once he started, he couldn’t wait to go to school every day even though his teachers mistreated him, pulled on his clothes, limbs, screamed at him and put him in time out for attempting to talk to the other kids – despite the fact that he could not yet form words and could only mumble and make friendly gestures.

Two weeks in they managed to expel him, which he did not understand either. He would still wake up at 6 am, begging and screaming until we would put him in his school uniform. Then he would get in the car to go to school alongside me, only for Dad to drop me off and drive my brother back home kicking and screaming. This happened every day for nearly six months.

Ever since the day I graduated, I have not stepped foot in the halls of my high school. I feel no need to be a proud alumnus of a place that showed such disregard, disrespect and discouragement to someone who needed it the most.

These are the aggressions my brother had to deal with throughout the various schools and institutions we enrolled him in. The worst part of this kind of neglect from society is that often the ones who are made to suffer have no inkling of how they are being treated, and so they are unable to even begin defending themselves.

My parents and I blamed ourselves for not knowing how to navigate this, not stopping to realize just how unprepared the world around us was too. We were waging a battle of our own, reconstructing life from scratch, learning things nobody ever thought to teach us, to show us, to even have empathy for. Disability is still looked at through a lens of superiority.

As I became an adult, my quietness over the years pressurized in my throat and became something purely combative. Every time they place parts of my brother under a microscope as a poor attempt to identify him or ridicule him, I am now the first to kick and scream.

I don’t like that his ID fits in a category, or that people make faces when he speaks. I don’t like that he is considered special, even when he is extraordinary.

We have sibling fights, I throw hissy fits because he eats all the ice cream and finishes all the cereal. He is 6 feet at the age of 15 and most days we worry that he will be a man who takes up space yet doesn’t understand social cues.

He now attends a ​​school for people of determination. He’s a celebrated athlete and competes in over six different types of sports, but he still takes his toy cars everywhere he goes and lines them up on the pavements and railings. If you look in his pocket you will find a little transformer inside.

The world does not understand him. So how do we protect him? But most importantly, why must we even begin?

YOUR INCLUSION COUNTS

Those who live with or grow up around disability learn very early on that outside the walls of your home (and most times inside too) there is never enough safety, and so we must learn to persevere in spite of it. What the world puts us through gets normalized and in time you forget how much you have had to sacrifice for a semblance of “normalcy” as it is currently perceived.

There was a point when my parents and I felt a sense of loss, a moment of humane grief for all the things my brother might never adapt to because there was simply no hope in a society that would adapt to him. We had to come to terms with the reality that he might never be able to live an independent life, be in a vibrant social circle where he doesn’t feel alienated, have consensual relationships full of love, or carry sole responsibility for his own wellbeing.

We grieve a version of him that will one day have to live in a world that might never learn how to be patient with those who need that extra moment, that helping hand, that quiet understanding.

Now that he is a teenager, it has intensified into a deeper grief, because he has begun to understand the difference between how he exists in the world and how others do. He only knows about this difference because people have forced him to question his own competencies, have alienated him, and walked away from him. I don’t think I have taken a full breath since the day he asked me why he wasn’t good enough.

Despite all these words I write, I still cannot speak for my brother’s experience or the countless others.

The barriers that society and the built environment create are harmful on so many unfathomable levels and can only be resolved with active unlearning, undoing, and the decolonization of the mind. The fight for inclusion is nowhere near over or begun, and if anything has become more urgent in the face of issues such as pandemics where those who are most vulnerable now have even more to lose.

Representation painfully came about thanks to the few who tirelessly fought for it, but it has now morphed into tokenism and so we must settle for a billboard as the fastest way to undo decades of stigma and oppression.

Who have you designed your inclusion for if able-bodied spaces are still an exhausting and trauma-inducing nightmare? We are quick to hold up disabled and neurodivergent people as their own advocates, which is the same as being shot and having to do surgery on yourself.

There are questions we must ask ourselves: Why does the fight always start when it is too late? Why can’t our imaginations take us to this world where not everyone is able? When will we start truly solving for that?

I’ve realized that most things in life are best understood when reciprocated, so I don’t blame the world for not understanding my brother, because he himself is still learning to understand the world. Bless him, he is kind in the way he goes about it too, like most marginalized communities have been for decades regardless of their continued dehumanization.

But me? I will remain relentlessly loud and unapologetic when my attempts to educate with love fall on deaf ears. I will slip it into every conversation, just to lose friends over their use of words and their lack of consideration. I will force them to look at their diluted sympathy in the face, to question what it is about individuality that makes them so uncomfortable.

In a place of power, I will only ever choose those who need me the most. I will be quiet if I cannot be intentional. I will scream if I must because anything else is settling for the script that’s been written, the spaces already carved. I will be loving, I will be loud, I will be angry and an ally, but most of all I will be my brother’s sister.

CREDITS: 

Illustration by Aude Nasr