For 22 years, I have been acutely aware of how my brain deviates from normal. These include our own intense emotions, our sensitivity to the emotions of others, and our affinity for rules.
Throughout my student years, I felt at ease in the world of academia.
It was a place where I didn’t have to mask and in fact, my hyper focus was an asset. Academic talent became my identity.
In other areas of my life, I’ve learned to dilute the qualities that others consider “weird” to an acceptable level, and in doing so, I’ve also diluted myself.
Eventually, the facade I had built crumbled as my compulsive studying became unsustainable.
My mental and physical health deteriorated and I ended up suffering from various mental illnesses, spending more time in the hospital than at home.
Interventions could not cure me because they took a one-size-fits-all approach. I found the therapy restrictive, coercive, and traumatic.
I endured pain for years.
It wasn’t until I entered my 20s that things changed and my focus turned to self-healing and advocacy.
Here are the lessons I learned along the way:
I’m disabled
Until this year, I had never identified as autistic, let alone disabled.
Now I realize that I have always faced and will always face challenges that most people cannot understand.
People with disabilities are like me. You cannot assume that a person is not disabled just by their appearance. (ABC Radio Perth: Rachel Burns)
Being able to cover up and fit in means I don’t look like I have a disability, but that doesn’t mean I don’t have a disability. I do this in many aspects of my life, but I don’t usually realize it.
One of my earliest memories of doing so was when I was in elementary school, when I first experienced obsessive compulsive disorder (OCD) and began to notice some of my own behaviors.
I specifically remember a lesson where I awkwardly held hands and flopped my hands to stimulate (a way to calm myself and get rid of energy). Neurodivergent people call this a “tyrannosaurus arm.”
I can still see the look in the eyes of my classmates as they approached me and started teasing me and imitating me.
From that moment on, I became conscious of the way I held my hands.
I learned to live my life in roles. It took up so much of my energy, time and concentration that I was in a constant state of fatigue.
To this day, I don’t know what it means to not feel tired.
Disability is not a shame
People with disabilities face barriers because society is designed for people without disabilities.
I created this illustration to show that accessibility isn’t about trying to fix someone because they’re broken, it’s about accepting them for who they are. (ABC Radio Perth: Rachel Burns)
A perfect example is communication.
When I communicate with other neurodivergents, it feels like a chaotic but glorious symphony to me. Our conversation flows like a torrent winding in all directions.
However, we live in a world where neurotypical communication is the norm and the lack of a rigid structure in conversation is a barrier.
Neurotypical communication requires following set rules, such as making eye contact, speaking in chronological order, and using specific body language and posture. If I don’t organize my thoughts in a socially acceptable way, people will underestimate my intelligence or think I’m being rude.
Similarly, some wheelchair users who encounter stairs describe the stairs as more inconvenient than the chair.
Not all obstacles are visible
When we talk about disability, we think of physical disabilities. However, it is not possible to determine whether a person has a disability just by looking at them.
I recently bought a green sunflower strap for my bus.
Green sunflowers represent hidden obstacles. This is a tool used to indicate the presence of an invisible disability or disability condition in a person.
The hidden disability sunflower is an internationally recognized symbol, but advocates say it’s not recognized enough in Australia. (Instagram: @hiddendisabilities_anz)
The concept was born out of a London airport passenger advice group in 2016, and began as a way to individually alert staff that a person might need a little extra support.
I have always struggled with public transport, and my pollution OCD, sensory issues, phobias, anxiety, and history of trauma certainly don’t do me any favors.
It didn’t take me long to realize that no one knew what the strap meant.
Neurodivergence is different from the movies
I feel confident that I know what autism and Attention Deficit Hyperactivity Disorder (ADHD) are, based solely on depictions of Dustin Hoffman’s autistic character in the movie Rain Man. I grew up with it.
Neural divergence is much more complex, can look very different, and may not be visible at all.
Research has shown that people assigned female at birth are less likely to be diagnosed with autism than boys or men because the model is built around men.
Delayed diagnosis is common for women and girls and can prevent them from receiving the support they need.
Although autism is often portrayed as a lack of awareness of social cues, I would argue that the opposite is often true for women and girls.
We develop socially faster than boys. Our brains collate social information to create internal manuals for how to behave. This means that we become very good at hiding our traits.
Often we appear normal and are not diagnosed until our late teens or adulthood, but we inevitably burn out in a world that was not designed for us.
Poor mental health is not a mental illness
Mental health is something we all have, just like physical health. That’s neither good nor bad, it just is.
A person may or may not be in good mental health.
People tolerate other people’s mental health until it starts to affect their own functioning, at which point they become too uncomfortable to make space for.
However, this is not a mental illness and many of us have no insight into it.
It is indescribably hurtful and invalidating for others to claim that they understand what they are. I’ve experienced it and they don’t.
It’s about turning my experience into something about them.
All disabilities are not equal
Psychosocial disorders (disorders resulting from mental health problems) remain largely ignored despite the devastation they can cause.
National Disability Insurance Scheme (NDIS) support is almost impossible to get, and even if you are eligible, the complexity of the process can be discouraging.
The reality is that not all disabilities are treated equally.
I sometimes think that if the reason for not being able to leave the house was a physical disability rather than a mental illness, they would have treated me more kindly.
My hope is to change the way we look at imperfection, to respect human dignity, to fight for it as a universal right, and to deeply recognize it.
I would like to draw attention to the connection between mental illness and neurodivergence, and for society to view patients as human beings.
Rachel is a 22 year old lived experience mental health and disability advocate from Boorloo (Perth), Western Australia. She is a member of numerous advisory groups, youth groups, mental health organizations, and consumer representative organizations, and hopes to pursue a career in advocacy and peer support.
This article was commissioned and produced as part of the ABC’s coverage and recognition of International Day of Persons with Disabilities.
