The elephant in the room: why lived experience should always lead

In recent years, lived experience has been receiving more and more attention, as it should. Government, organisations, researchers, and professionals are starting to recognise the strength and value of listening to those who have experienced marginalisation and discrimination from systemic failures that were previously overlooked. Which is great.

However, it is still not yet widely included and is often tokenistic in attempts. I want to talk about why this needs to change by sharing my own lived experience – see what I did there?

As a young woman who grew up in a military family, hierarchy and rank were ingrained heavily from a young age. To the point that I strongly believed that the more letters you had after your name, or the more qualifications and the higher rank you were, the more you should know. That it must mean that you were an expert in your field.

And then I grew up.

Let’s talk about privilege

I quickly realised that those titles and extensive knowledge only helped a part of the population, the people who had the most privilege. The privilege of wealth, race, gender, sexuality, body size, location, ability, and more.

I spent most of my twenties in and out of doctors’ offices. I’ve seen over 100 health professionals (allied health and specialists) in the last decade of my life, and even more before that. I would frequently hear, “you’re too young to be here,” said jokingly by well-meaning doctors and medical administrators. I agree, I was too young to be spending most of my time chasing answers and help. I should’ve been out in the world living my life and enjoying my youth, like most of my friends.

That’s not how it works. We don’t get to choose our circumstances – well most of us. The less privilege, the less choice. I didn’t even know the extent of my lack of privilege during this period. The only privilege I was aware of was visible.

I thought I was very privileged, and I am. I am a white cis-woman from a middle-class background with a higher education degree and gainful employment.

However, that privilege doesn't outweigh the oppression I still faced from the many invisible barriers that existed simultaneously. The barriers I struggled to name and identify.

Invisible privilege and oppression

Often privilege and oppression are discussed around gender, race and class. All of which are somewhat visible forms of privilege. The invisible privilege, or lack thereof, is harder to see - things like having a disability without needing obvious aids, having a mental illness, or being neurodivergent. These are all difficult to know on a surface level.

For me, it was even more complicated, because I had all three and I was completely unaware. I knew I had differences and difficulties, but no one had ever labelled those things so I wasn't sure how to articulate them and I spent most of my energy trying to hide them.

I felt like I couldn't complain because I had much more overt privilege than most.

There are so many people in the world facing far more barriers than I was and am. This is where comparison can be dangerous. Just because I wasn't the most severely affected person doesn't mean my struggle wasn't and isn't valid.

Slowly, as time went by, and the diagnoses revealed themselves, I started to realise that my overt privilege, although still strong, was not all that it seemed. This makes me wonder:

How many other people are walking this earth unaware of the oppression they face because it's invisible.

Please note that I'm not trying to say one is better or worse than the other, merely that the more invisible, the more difficult it is to call out or see. The same could be said with visible privilege, if I am not chosen for a job because I'm a woman, that's discrimination, but it's harder to prove than if say I was overtly told I couldn't have the job because I have kids. Both are forms of oppression, one is just more visible.

What I am trying to say is that discovering these invisible forms of oppression helped me to find my voice. Helped me to advocate for my needs and those of my community.

This is why lived experience matters - so people don't have to go unsupported for decades of their lives like I did with my multiple invisible disabilities.

The diagnosis disaster and the awakening of lived experience

In no accurate order, meaning the diagnosis date did not align with the length or severity of these 'conditions' I experience. However, I do think it highlights the least supported and understood by society by the timeline of diagnosis alone. Meaning we understand far more about anxiety and depression than we do about autism or eating disorders - which are both heavily stereotyped at the cost of those who are #actuallyautistic and who have lived experience with eating disorders.

At first, it was basic mental health. I was diagnosed with anxiety and depression at the age of 23, even though I’d been experiencing both for most of my life.

Then it was chronic illness. From chronic pain after a car accident to chronic fatigue, a skin condition, and more.

Five years later, after many surgeries and therapies, I was told to see a psychiatrist. My pain specialist said:

"Your chronic pain can't be fixed and therefore it must be something wrong with your brain."

He wasn't entirely wrong, but mostly he was.

My chronic pain did eventually get better. And supporting my brain did help somewhat, but there was nothing wrong with it. There was a lot wrong with our health system.

The psychiatrist diagnosed me with Post Traumatic Stress Disorder (PTSD), both from the car accident and a sexual assault that happened to me at work as a Graduate.

This was a turning point for me.

Harmful stereotypes

As an Army brat, I thought PTSD was only for military people who had served in active war zones – which most of my family had without any PTSD diagnoses. How could I have PTSD from a car accident and an assault? First-world problems, right?

I’d never seen real suffering. Like my father did in Somalia. Or like my grandfather did in Vietnam. Or my brother did in the Middle East.

They were all highly successful, highly ‘functioning’ humans, who had got on with life. So what was wrong with me? I'd never been to a war zone.

Even though I’d played an active role in my health journey for over five years, it was the first time I truly started to question the ‘experts’ and decided to do my own digging.

Seeking answers

I no longer went to Dr Google or medical textbooks, the old school, and rather superficial resources, from what I’d experienced anyway. I started digging down into the communities of lived experience. The chronic illness and mental health bloggers and social media connections that I’d followed and found solace in these many years.

I started to see a connection between ‘signs’ of PTSD and Attention Deficit/Hyperactivity Disorder (ADHD). I initially dismissed these as there was no possible way that I had ADHD.

I could sit through entire movies from a young age, well before most kids could. I could stay in my seat in class, not like the boys I knew with ADHD that were always running around. I got good grades.

Didn’t people grow out of it, anyway?

Incorrect. The more I dug into real-life accounts that went beyond the limited diagnostic criteria that was created based predominantly on observing white men, the more my jaw dropped to the floor.

How could I have ADHD? And more importantly, how could I not know?

I’d spent years seeing doctors and had been to eight different schools.

How could so many educators and health professionals miss this (now rather obvious) 'disorder' that I clearly had?

I went to my General Practitioner (GP) and told her that I thought I had ADHD. I had a whole list ready to go, as I had learned from those with lived experience that it was commonly missed and dismissed in women.

She didn’t blink twice and referred me to a psychiatrist who specialised in adults with ADHD and the wait began.

Not what I expected

A few months passed, and I was more confident than ever that I would walk out of that assessment with a diagnosis of ADHD. That it would explain many of my failed healthcare treatments and give me answers to why I couldn’t get better.

I came prepared, not very ADHD-like, with a binder of paperwork that included all my school reports, university results, and a PhD length list of my ADHD-traits and experiences.

Luckily, and I say luckily because this next part is rare, the psychiatrist I saw really was one of the best in Australia and could truly understand my ‘complex’ brain. At the end of our extremely long and intense session, he asked me:

"What do you think you have?”

I said I already had the anxiety, depression, and PTSD diagnoses, but that I thought there was something deeper, something inherent about my brain that fundamentally affected the way I perceived the world.

I told him I was sure I had ADHD.

He said, “yes and anything else?” To which I responded with a confused look, and asked, “is that a trick question?” All while my head started to spin, what other disorders could I have missed? Am I broken? What is he going to say?

Finally, he put me out of my misery and told me:

"You certainly do have ADHD combined-type and you also have Autism Spectrum Disorder (ASD)."

What? English, please?

I didn’t even have the usual pre-conceptions around the Rainman movie. I had no idea what that meant. Isn’t that what weird little boys had… yes sadly, lots of internalised ableism.

I was President of my University Law Society (I can literally hear my husband's eyes roll as I said this), Debating School Captain, the youngest student in my law exchange to Oxford University, and I received Graduate job offers from top-tier law firms and the Federal Government.

How could I have Autism?

I was so ignorant. As many still are.

Autistic and proud

Once I started to investigate autism in women, especially, I quickly discovered that I was in fact autistic. I couldn't believe that I hadn’t known it for 28 years of my life. My parents were shocked and felt like they had let me down by not knowing sooner, they hadn't.

My mum later discovered she too was autistic and had ADHD. Which explains why my 'difference' seemed normal to her. Like mother, like daughter.

This spurred on my hunger for knowledge.

How was this missed? How could I not know? How could all my teachers, parents, doctors, and employers not know?

It’s called masking. But that’s for another day.

The more I read, the more I felt completely lost. As if I’d been speaking English my whole life and was just learning that I didn’t understand verbs. Did it mean I couldn’t speak English? No. But it did mean that I had been using the language slightly wrong and that it explains why people didn’t always respond to me as I intended, no matter how hard I tried to say the right things.

Understandably, it took some time to wrap my head around my own neurodivergence. To shift away from the depressing deficit-based pathology paradigm* and move toward the neurodiversity paradigm.*

*see image for definitions.

That's not all

When diving down the rabbit hole of autism research, I discovered the significant connection between autism and Ehlers Danlos Syndrome (EDS). I had previously suspected that I had hypermobile EDS, but had been dismissed by multiple rheumatologists (who didn't specialise in EDS). Turns out I do have it. EDS explained many issues I’d experienced in life regarding joint problems and connective tissue. It also explained why traditional treatments hadn't worked on my car accident injuries. They were created for people without hypermobility or sensory issues.

And finally...

Then it was eating disorders. Last, but certainly not least. I came across a small pocket of research linking autism with a higher risk of developing an eating disorder.

The one thing that had been overtly obvious since primary school, my weight and diet, was in fact extremely disordered. And because dieting is so normalised by society and weight is so demonised, no one ever questioned my restrictive behaviours around food. If anything, they were regularly applauded, especially by doctors.?

What now?

Armed with these many new labels and a newfound understanding of myself, I got to work finding healthcare providers who could support me. Providers who had the competence to acknowledge their own limitations and not blame me for any failures.

This was far more challenging than it should be.

Luckily, my psychiatrist knew a rheumatologist who specialised in EDS as he had many autistic patients with EDS who had seen her. It was a quick and straightforward diagnosis.

I found a psychologist who specialised in autism (who was neurodivergent herself). She put me on to a psychologist who specialised in eating disorders, who also understood the basics of neurodivergence because she had trained her. This is surprisingly a rare combination in a psychologist, given the high prevalence of Autism and ADHD in eating disorders.

I spent the next two years making more progress than I had in the combined 28 years of seeing hundreds of doctors and allied health professionals before.

Spread the news

Once I saw what a simple shift in treatment and finding the right answers and supports did, I wanted to scream it to the world.

I’d spent my formative years being told that I was the problem. I was broken. I was taught to hate myself by a health system that is not neuro-inclusive.

No one should ever have to do this.

All it would’ve taken, for the many 'professionals' who failed me, was to admit their own limitations and unconscious bias. But they couldn’t possibly be wrong, they were evidence-based after all. Therefore, I must be wrong.

They hadn't listened to or placed value in lived experience.

Lived experience matters

I’m a lawyer with a background in human rights and national security legal policy. I’m not a doctor, medical or PhD-wise. I don’t have any experience in providing health services, just A LOT in receiving them.

I never thought that I had any expertise or anything to offer health policy reform. And it was not until I got involved in disability and health advocacy, that I heard about the concept of lived experience.

We are the experts by experience. You cannot learn in a textbook or clinical setting what we learn through suffering first-hand neglect, oppression, marginalisation, and trauma.

Lived experience is just as valuable as the academic credentials or prosessional titles that people earn. It needs to be treated with equal respect and dignity.

The elephant in the room

Lived experience is starting to be considered and included in policy development. However, what is heavily missing from the dialogue is why it matters, to begin with.

Without understanding the why, how can we expect widespread inclusion?

So, I’m going to help shine a light on this beautiful, but frequently forgotten, elephant.

Some benefits of actively involving people with lived experience in all stages of planning and policy development include, and go far beyond the following:

·?????increases credibility and trust with the community

·?????breaks down stigma and stereotypes

·?????ensures accessible, adequate, and appropriate products and services are available

·?????creates stronger community engagement

·?????limits risk for neglect, discrimination, marginalisation

·?????reduces traumatic experiences in the population

·?????creates inclusive environments, products, and services

·?????ensures funding and research are going to appropriate areas

·?????increases likelihood of positive outcomes

·?????reduces unconscious bias

·?????actively questions privilege

·?????allows for diversity and inclusion

·?????reduces systemic barriers

·?????protects vulnerable populations

·?????enhances equality

·?????increases economic performance

·?????reduces social and economic costs (productivity impacts, burden of disease, health system expenditure, informal care, lost earnings, etc.)

To name a few.

Including lived experience is a process that takes time and commitment. It’s not something that’s going to happen overnight. However, it’s absolutely doable and it’s absolutely necessary. We must have widespread tangible efforts to incorporate lived experience voices more deeply into every level and every stage of policy development.

In order to have services and systems in society that are effective and efficient for us ALL, it’s crucial that the diverse beneficiaries are involved in the planning, monitoring, delivery and evaluation of such endeavours.

Intersectionality

In order to craft a new world order – one in which all people are valued equally, free to enjoy their rights, and able to live with dignity – we need profound?cultural?and?social norm change.

Lived experience contributions to systemic cultural change need to incorporate a nuanced understanding of?intersectionality?that recognises how power, privilege, and oppression simultaneously exist within all of us.

Recognising our sites of oppression and power allows us to increase our sense of?agency?to activate change.?Intersectionality is the way our identities?intersect?and affect our lived experiences. It's a term used to help us understand how multiple forms of overlapping oppressions?affect our lives in nuanced and context-specific ways.

Our identities include sites of oppression and corresponding?sites of privilege. These sites of privilege exist along with, in spite of, or even as a result of the ways in which we are oppressed, and they give us the power that we can leverage to enact change in our communities and spheres of influence.?

I have many privileges and I also experience oppression. I try to leverage my privilege to fight for the oppressed, including the oppressed parts of my own identity. My disability, my gender, my neurodivergence, and my body size.

Intersectionality should always be included in lived experience voices. Without it, there is no hope of true inclusion and societal progression.

Lead with lived experience

It’s incredibly important that we work together as partners, both lived experience and professional experience.

Lived experience should always guide research, service design and delivery. In health systems, employment practices, education, and more.

This will ensure services are designed and delivered with user-led insight, to ensure quality control, and ensure relevance and accessibility to the whole population, not just the privileged or majority. Universal Design in a nutshell.

Universal Design is?the design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, ability or disability.

Championing lived experience and ensuring we have inclusive and accessible policy needs to come from the top. Now that we have a Prime Minister who was raised by a woman with disability, I hope this need for universal design is prioritised on a national level.

No Government grant should be given without ensuring lived experience co-design and inclusion are the top priority. This is just one simple way our leaders can show that they truly embrace and support all Australians.

Lived experience matters.

#livedexperience #intersectionality #universaldesign #leadership #inclusion #disability #neurodiversity