I woke up drenched in sweat, trying to find my phone that kept buzzing. It was my fourth alarm. Snoozing it, I turned the covers over and got up only to fall over. My limbs felt like dead weight. I reached for my phone to google my symptoms.
A message caught my eye: two friends had tested positive for COVID-19. We'd spent all day together just two days ago.
I held my breath and crawled across my room, scrambling to find a RAT. The test showed positive in less than 15 seconds. I prayed for it to be defective but alas, the control line was quick to follow.
I felt scared and confused. Living in a student share house, could I use our kitchen without exposing others? What about our bathroom? Did I have any food in my room? Could anyone bring me painkillers? All these thoughts rushed to mind, making me feel faint. I reached for my water bottle; it was empty.
Unsure of what to do, I asked my friends about their symptoms. Wait, how did they know where they were exposed?
They'd been told they were a close contact a couple days before our get-together. This was news.
My friends had put me at risk despite knowing that my health insurance didn't cover COVID and, being away from family, I had no-one to nurse me back to health, especially during exams. They knew that since the pandemic began, I had restricted my outings to keep myself and my disabled friends safe.
Feeling distraught, I messaged my friends demanding to know why they had knowingly exposed me to COVID. None of this had crossed their minds, they said. With restrictions easing, they'd forgotten about the risk of exposure for at-risk Canberrans — myself included.
I felt abandoned by those I trusted most.
The day before testing positive, I had attended a meeting with several disabled activists. Thankfully, I joined remotely, but I hate to think who would've been exposed, had I not.
It puts an uneasy thought in my mind: how many lives are put at risk to avoid inconveniencing the majority with community mandates?
I used to be in that majority too, but it is no longer a privilege I have.
Social 'scripts' and extra steps
Growing up neurodivergent, I was constantly seeking new solutions to reduce the barriers that disabled me.
That's disability to me: barriers that disable us from fully participating and engaging with our daily life.
To avoid misunderstandings and embarrassment in my interactions, I've developed some strategies and social "scripts". Let me explain.
I always have the notepad open on my phone. When friends mention new hobbies, work schedules, names of co-workers or pets, I jot them down to remember to ask about later.
I count to appear attentive and maintain eye contact. Ironically, this often distracts me from the conversation.
I set alarms on my phone for every meeting I have planned for the week, whether it's an appointment with the doctor, meeting a friend for coffee or calling my parents. I also have alarms for when to leave the house to get there on time. On really difficult days, I use alarms to remind me to eat during the day.
Disabled or not, we all have strategies in place to make sure that everything keeps ticking over. The difference is noticeable, though, when I have three extra steps to wear my socks. It really adds up.
Feeling like a fraud
Learning about neurodiversity has been validating to understand why I find certain aspects of my daily life difficult.
Yet I also feel like a fraud.
I've had to convince — even prove to — friends and family that certain behaviours are connected to my neurodivergence. They like to play devil's advocate because "not everything is linked to your diagnosis".
A friend once accused me of "co-opting disability for my convenience".
These narratives feed shame and guilt. I find myself overcommitting to things — trying to meet my "full potential" and fight against being labelled "flaky" or "lazy".
But it's a disastrous cycle. Navigating ableist spaces and comments leaves me feeling drained. I have to be on guard. Without a space to recharge, my over-commitments become unrealistic and, as a result, I end up confirming the negative narratives that people misattribute to my personality.
Intersectionality and isolation
But I am more than my disability.
I am a brown, disabled, Muslim woman. And sometimes, my intersecting identities only fuel the isolation I feel.
A few years ago, I moved into a share house for the first time. Hyper aware of my differences, I tried to mould myself and fit with Aussie culture.
At the time, I wasn't practising hijab. I'd manoeuvre all conversation away from religion and faith.
For a year, I made excuses to avoid drinking on our weekly wine nights. During Ramadan, I'd sneak into the kitchen at 4am to silently eat before my fast began.
Eventually, my housemates put two-and-two together, but them knowing I was a practising Muslim didn't ease my discomfort. Instead, I felt like I owed them for accepting me.
The first time I stepped outside my bedroom with hijab, I felt like I was purposefully othering myself. Even now, a year later, I receive marked reactions when I meet a friend who hasn't seen me in hijab before.
The luxury of cutting people off
I've often felt that I am friends with people who disagree with my identity.
But I don't have the luxury of cutting off everyone who has offended me.
If I were to cancel every person who made an ableist, sexist, Islamophobic, or racist comment pleading ignorance, I would be truly isolated.
Disabled women are already battling stereotypes labelling us as angry and non-compliant, I cannot afford to add angry Muslim to the list.
My intersectional identities afford me this tolerance for discrimination. To me, this is the cost of my intersectionality.
I find myself negotiating and balancing contrasting values in social situations even with my closest friends and family.
You've done this too, I'm sure. Perhaps when a colleague makes a comment that makes you uncomfortable. You can either choose to confront them or ignore it for the sake of keeping peace.
I have been in that position with my parents, friends and co-workers. In fact, I can't think of any person in my life today with whom I have not had to negotiate this awkward and confronting situation.
Dismantling assumptions about disability
The otherness I've felt from years of being misunderstood has led me to internalise difficulties as my fault. It's been alienating, and has shaped me as a person.
But my personal struggles aren't inherent to me, or my brain. Disability comes from societal barriers.
It's a lesson I learned back in 2017, when I found myself in the small office of the student association at my university.
I'd previously attended two meetings for the disability collective — the first, I was accompanying a friend; the second, because I'd been on campus and thought, "why not?"
It turned out it was voting week and officer nominations were closing within the hour. The outgoing disabilities officer queried whether I was going to run for their position.
I hadn't even considered it.
They asked me, "Did I face barriers that prevented me from participating and engaging in daily life?"
The answer was yes.
But I didn't want to take that opportunity away from students with an actual disability. And, surely, I wasn't disabled enough to represent a disability collective?
That three-minute conversation overturned my assumptions around disability.
They asked me whether I was questioning myself or leaving the position open out of sympathy. The collective is a community for disabled students, it isn't special treatment or a spot to be taken away, they explained.
Nominating for the officer position that day changed my life and began my advocacy in this space.
After a lifetime of not being able to express or even understand why I found it so challenging to connect with others, I can now understand and share my experience.
Embracing my intersectionality has connected me to a rich and diverse community, where I finally feel seen.
With their support, I have learnt to voice my discomfort even when it inconveniences those around me.
But this burden shouldn't fall on the disabled community.
I hope for us to build a society that celebrates diversity and centres inclusion, easing the burden on marginalised communities. Community is at the heart of intersectionality and without one another, we cannot pave the path to equity. Nothing about us without us.
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