#13 I can slow down before I break down.

Thirteen Years Disabled. Thirteen things I've learned since I acquired my disability.

Each year, on the anniversary of acquiring my physical disability, I reflect on what I’ve learnt over the years. It is by far my most popular edition of Mostly Unlearning and serves as a balm for the ever-present internalised ableism so many of us feel, but can’t always name.

This year, I cried while drafting, while writing, while editing and, most likely, when publishing this edition.

I turned 40 this year, which means I’ve now spent roughly a third of my life consciously disabled. Writing this I reflected on my life in thirds - the third before my body hurt, the third where I lived in pain, and the third since I acquired my physical disability.

This edition was supposed to focus on the final third, adding a thirteenth learning to last year’s edition. But this year, I found myself in a disability backslide, symptoms outpacing the hard fought habits and well-worn path of managing them. Every tool in the toolkit didn’t cut it until I was back in the hospital, facing the very real possibility of a spinal fusion.

In this edition, I’ll share the thirteen things I’ve learned, and unlearned, since acquiring my disability 13 years ago. Last year’s edition was optimistic and confident, I wrote about “gaining confidence in my ability to change the world. The whole damn world”. And while that confidence has certainly kept me buoyant, this past year has tested my resilience and turned me inwards to reexamine lifelong habits that may no longer serve me.

Indents are PTSD flashbacks

The last year

I was ugly crying in the toilet cubicle at the hospital, PTSD sobs so heavy I could barely breathe. I’d made it from the elevator to the toilets before the panic set in. I knew where the toilets were, of course, I’d been here before on weekly trips to see one of the many specialists throughout my pregnancy. This particular spot was the intersection between maternity and neurosurgery. Right in front of me was the now-empty physio room I’d frequented during my pregnancy.

The trigger? Otherwise innocuous tape on the floor, a relic from COVID safety protocols. Worn, but visible, the tape marked an imaginary but very real line that separated the maternity hospital from the main hospital. A line crossed immobile in a hospital bed, never actively walked across. The line that kept me from my newborn baby and my partner.

“Breathe”, I told myself, “You’re safe, she’s safe” I repeated in my head while I searched for surgical scars as physical reminders I wasn’t pregnant.

I dont stop crying, I can’t. I’m not sobbing anymore, just tears falling down my cheeks as I wait for my number to be called. I’m here because my back hurts and my disability is getting worse. The saving grace is that I’m taken seriously, which is not always the case. I’m kindly told, “We need an MRI” before trekking back through hallways littered with triggers.

The thing about trauma is that it is visceral; it is happening even when it’s not. It doesn’t stop when the trigger goes. The body feels it for much, much longer. I’m supposed to go home and log into work. I know I can’t, so I message my boss, “I’ll need the day off”.

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Next visit I made it out of the elevator and past the toilets, “last time was a one off” I thought proudly to myself. I’d just come from facilitating a chaos immersive experience with 200 designers and an Empathy Lab. I was running late, partly on purpose, I can’t PTSD panic if I’m focused on real life traffic, parking and rushing.

“I’m okay”, I think to myself. “I’ll be fine”, I hope as I walk through the automatic doors with the MRI tech. And then I look around, my eyes locking in on a corner. Ther corner where I was, just 4 hours post c-section and 6, maybe 8 people, I dont remember, carefully lifted me onto a gurney that fit into the MRI machine. I close my eyes to shake off the memory. Bad choice. I can see the ceiling. I am time-travelling back into that body, my body, the one that was so scared, that couldn’t cry or feel because of the cocktail of drugs and hormones.

I stop walking, tears streaming down my face, this time before I can get to a private space. “Read my chart” I say between sobs, “the last time I was here” was all I could get out before another sob cut me off. She looked at the chart, looked up at me with a softened expression and kindly waited for me to compose myself. Kindness and warmth - another saving grace not always experienced with medical professionals.

I try to forewarn people about these reactions. I’d rehearsed what I’d say to the MRI techs while they positioned me in the machine, trying to find a way to laugh with them rather than sob solo.

I didn’t remember the waiting area ceiling.

That’s the thing about trauma, it’s predictable and random at the same time. This time I’d planned to take the rest of the day off.

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These memories serve as a reminder of the mental toll of physical symptoms and a reliance on resilience. Writing this, I can see I should have known something was off when an hour in an MRI machine was the most relaxed I’d felt in months. The melodic thumping, a sensory relief from Zoom calls, the ping of a Teams message or Messenger chat. A kid demanding more toast, more TV, more cuddles. Wondering if this was a new issue or a progression of the same spinal issues. A thumping, but not another demand. A thumping beating towards an answer, and a plan.

The last year has reminded me that disability is not linear or contained to physical. It will always be a part of my life, my body and my mind, and I need to slow down before I break down. To understand what I learned this year, you first need to understand my journey to acquiring my disability.

Unlearning lifelong habits

I had been here before.

Debilitating back pain started at puberty. Puberty sucks; it is confusing and, in my case, painful. It was about this age I first experienced bilateral sciatica, a sharp, knife-like pain across my back and down my legs. I would spend the next 14 years managing this pain as it oscillated monthly, and randomly, until one day it was gone, replaced by permanent pins and needles in a leg that I could no longer use, or feel.

Adolescence.

The impact of experiencing physical pain at such a developmentally critical stage has had lifelong impacts, broader than the actual condition or pain. A big driver here is self-regulation fatigue: living with daily pain depletes cognitive and emotional resources, leaving less capacity to resist impulsive or risky behaviours.

Grit and tenacity became superpowers, until they weren’t.

In part, I ended up disabled at 27 because I didn’t stop until something stopped me. My back hurt, and I kept going, often on autopilot, pushing through until I broke myself.

Research by Angela Duckworth labels this Grit, a “sustained effort and interest over years despite failure, adversity, and plateaus in progress.” Grit is Perseverance + Passion for long-term goals, the staying power that drives people to keep showing up even when progress feels slow.

Grit, tenacity and determination are some of the strongest mental muscles I possess. It’s how I’ve learned to walk three times in my life, and in my 20’s how I could ignore physical pain for career gain. But as so often happens over over-reliance on strengths can also lead to poor outcomes.

Critics of Duckworth’s Grit theory note that, for those of us in chronic pain or health-limited settings, grit without boundaries may push someone to ignore warning signs, overexert, or persist with harmful behaviours. In my case, not resting, pushing through pain. In hindsight, grit without boundaries was my undoing.

There were signs I should have slowed down. In the weeks leading up to surgery, I remember telling a work colleague I couldn’t feel my leg, then walking back to the office to run a meeting, lying stomach down, on a meeting room floor.

I didn’t have the skills or knowledge to know I needed to stop and rest. And at 27, it broke my spine.

Life-long impacts.

13 years ago, I woke up from spinal surgery, aged 27, without the use and feeling in one of my legs. And so began a journey to learn to walk again, maintain independence and hold onto a career.

Being a parent, maintaining a career with a disability is statistically improbable. The world isn’t set up for us to do these things or have aspirations beyond having a job or basic necessities like a place to live. The maternity hospital wasn’t prepared for a disabled pregnancy. Maintaining employment, let alone a career, defies statistics.

I’m at daycare drop off “haha, you’re an old lady with a walking stick”, said one 5-year-old boy, “yeah, old lady” chimed in two more.

“That’s unkind”, I calmly responded. Inside, I could feel a familiar sense of overwhelm bubbling up. I’d known these kids since they were in nappies, so why are they now commenting on my walking stick? And why was I so upset?

Once out of the centre, I called my Mum, “I can’t do this, I can’t have another surgery, I can’t learn to walk again”, I sobbed, “I can’t, I can’t”, I repeated through sobs.

Three 5-year-old boys should not have me spiralling.

This time, I was able to see I wasn’t coping.

Learning, and unlearning - a list from the last year

• My disability is not linear.

• It is not contained to my physical body.

• It will always be part of my life.

• Resilience is useful in acute situations, but chronic issues require more.

• The resilience I have earned can help me to show up differently.

• I can use my innate tenacity, grit and determination to slow, not stop.

• I have goals and aspirations.

• They are not in line with society’s expectations of a disabled woman.

• To get there, I have to slow down before I break down.

That’s learning number thirteen: I can slow down before I break down.

Slowing through

• Cancelling plans, big things like speaking events or everyday things like catching up with a friend.

• Reading actual books. In the sun, with a cat poured over me.

• Low-impact movement (the ego dissolving “seniors” aquacise)

• Sleep hygiene, early nights, and less alcohol.

• Decreasing demands and accepting help; hiring a cleaner, ordering groceries to be delivered, and taking long-avoided medication.

• And the absolute hardest one, reducing work hours and taking entire days to recover.

Thirteen things I’ve learnt since acquiring a disability

Throughout the 13 years I’ve lived with and managed my disability, I’ve come to learn and understand myself and the world around me in ways I dont think I would have otherwise. It is a privilege to have a grounding experience, and I value the lessons I’ve learnt along the way.

Some of these may seem obvious, others confronting. Either way, it has been over a decade of unlearning for myself and those around me.

1. I am disabled. A label that took me years to confidently embrace.

2. I have access needs. I need things others might not in order to participate equitably in work and life.

3. I have rights, and they are human rights. These are under the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and, here in Australia, the Disability Discrimination Act.

4. I have experienced discrimination due to my disability. Having a label for some of my experiences helps me understand them and move forward.

5. I have experienced violence due to my disability. It wasn’t my fault. It’s a shared experience of people with a disability.

6. I am not alone in these experiences. There is a world of disabled people having similar experiences.

7. I am human - resentful and thankful.

8. I am worthy of taking up space - in able-bodied and disabled spaces

9. I am part of a movement towards disability rights and acceptance of disability as natural human variation worthy of being seen, loved and a part of mainstream society.

10. I have a voice, one that people are interested in hearing.

11. I am a change maker, here to make changes to mainstream services in support of people impacted by disability.

12. I am in control of how ableism from others fuels my internalised ableism.

13. I can slow down before I break down.

This is not the lesson I’d hoped to learn; it’s far from the inspiring and confident tone of 2024 reflections.

And it is the lesson I needed to learn.

The last year has reminded me that disability is not linear or contained to physical. It will always be a part of my life, my body and my mind, and I need to slow down before I break down. Impact as a disability advocate necessitates that I look after myself.

Unlearning prompts

In today’s edition, consider unlearning:

• What would happen if you slowed down?

• What might you notice — in yourself, or others — if slowing down wasn’t seen as failure?

That’s it.

Join the unlearning.

You’ll find these more personal reflections in my weekly newsletter, and the more corporate and professional unlearnings will continue on LinkedIn.

My work is geared towards shifting these systems to take the pressure off people alongside commercial outcomes. You can subscribe to learn with me. I’ll share what I learn (and unlearn) about accessibility, inclusion and disability. Together, we will consider the implications for impactful commercial and human outcomes.

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