I delivered the keynote on “Breaking the Bias” for the Rotary International Women’s Day Breakfast 2022. I spoke about breaking unconscious biases related to people with disabilities. What comes to mind when you think of the word ‘disability’? Is it someone in a wheelchair?
These images come to mind because they are easily visible and often what’s portrayed in the media. In reality, 90% of 4.4 million people with disabilities in Australia are living with an invisible disability. It’s crucial for there to be more diverse representations of people with disability that don’t reduce them down to a stereotype.
A way we can combat these stereotypes and unconscious biases is through speaking up to bring visibility to invisible disabilities, which improves awareness of disability as shared universal human experience likely to affect each one of us at some point in our lives.
Today, I share my experience with invisible disability over the last 12 months to raise awareness and help reduce the stigma around invisible disability, and with the hope that anyone who relates to these experiences can feel more seen and less alone.
In March 2022, I was working full time as a clinician in Special Needs Dentistry, as well as an ultramarathon runner, rock climber, aerialist, and in the middle of training for an Ironman triathlon.
In April 2022, I became unwell with COVID and experienced severe nasal and respiratory symptoms which persisted for several months, along with joint pain, fatigue, brain fog, sinus and chest pain, palpitations, and shortness of breath. I went from a young, fit, and healthy person to being diagnosed with three medical conditions: long COVID, asthma, and vocal cord dysfunction.
It was confronting to go from being a person who had the physical capability to run an 105km ultramarathon, to then struggling to breathe while vacuuming, but the most devastating and difficult part to come to terms with, was losing the ability to look after my patients. Not accepting my new physical limitations, I persisted in trying to get back to work before I had recovered, and in the middle of attempting multiple extractions while wearing a P2 mask, I pushed myself too far and it resulted in a trip from the clinic to the emergency department.
Then followed many months of regular appointments with various health professionals: my GP, respiratory specialist, ENT specialist, cardiologist, speech pathologist, pulmonary rehabilitation team and respiratory physiotherapist, alongside wrestling with the uncertainty of long COVID being a relatively unknown condition and with only experimental treatment options available.
All three conditions are not apparent when you look at me. This invisibility, has its advantages and disadvantages.
A significant disadvantage of invisible disability is that sometimes people don’t believe you when you tell them about the hidden symptoms you experience. Over many years caring for my patients with non-visible disabilities, I heard them share stories of the judgement they received from others – from being accused of faking their symptoms or exaggerating their severity and resulting in them having to constantly justify and prove their existence. I experienced this same stigma with my conditions, including from colleagues and people who had COVID and assumed my symptoms couldn’t be that bad because they had recovered from it.
My non-visible disability became visible through a Holter Monitor for 24 hours, to review my cardiac abnormalities. The fact that it was tangible and visible, helped legitimise my symptoms to others who may have doubted the severity of my illness. But it also came with strange stares in public, unwanted attention to my illness and questions directed towards it at times when I didn’t feel prepared to share about it. This is an advantage of the invisibility, the advantage of secrecy, and the choice to select who you disclose your invisible symptoms to and in your own time.
I am grateful for having been through this journey, as tough as it was, because of what it has taught me. I now have more personal understanding of the daily challenges my patients who have chronic conditions are faced with and can bring this understanding to deliver better care for my patients.
It also allowed me to practice the power of acceptance. Initially, I had been trying everything in my power to get back to my pre-COVID level of function, which included being full time in the clinic, and eventually it became apparent that I was resisting the reality of the chronic limiting nature of my medical conditions. The non-acceptance of this reality layered on additional self-created suffering, through wishing things were different from what they were. Once I accepted the physical limitations for what they were, it opened me up the other avenues I could contribute to my patients and my profession outside of my role as a clinician, and has created space for engaging in broader scale oral health advocacy, re-engaging with my passion for mentoring and coaching to support others in my profession – all of which align with my mission to create a more inclusive society where every person can access oral healthcare, to eat, speak, smile freely, and reach their full potential.
It has been almost 12 months integrating these conditions into my life, and I have reached a place in my recovery where the symptoms are less severe, more stable and I have proactive strategies to get back to doing the things I love, and though it looks different to how my life was before, I fully embrace and accept that. While I may not be back to pre COVID levels of Ironman training, I’m back to the swimming pool and having fun celebrating reaching each new milestone, as opposed to comparing to what I used to be able to do before.
It has taken a while to feel comfortable to share my experience publicly – especially after experiencing judgement from people who were made aware of my invisible conditions through most of my journey. But, when I came off the waiting list and attended my first appointment at the long-COVID clinic, the physician shared the stories of his other patients, other young, fit and healthy adults whose lives turned upside down from long COVID and were experiencing the same symptoms I was, and it helped me to feel less alone in my struggle. I finally felt seen and heard, and so I hope my sharing of my story can help someone else in the same way it helped me.
People with invisible disability face a different type of stigma to those with visible ones. When people are accused of faking their symptoms, or when people minimise or invalidate their experience, it can stop them from talking about their disability or cause them to downplay their experiences – which perpetuates the invisibility and stigma even more. Each one of us can contribute to breaking this stigma through responding with compassion and without judgement when a person with an invisible disability choose to share their experience, or through stepping out in courage and sharing your own experience of invisible disability. Together, we can build a more understanding and more inclusion in our society, one story of lived experience at a time.
It was an honour speak for International Women’s Day –a day where we celebrate how far we’ve come in creating gender equality, and continue to work toward a world where regardless of gender, everyone has equal rights, privileges, and access to opportunities. What this day represents, holds special meaning for me. What International Women’s day means to me, is our commitment to inclusion.
What does inclusion mean to you? What does an inclusive world look like to you?
For me, an inclusive world, is one where difference is valued and celebrated.
A world free of bias, stereotypes and discrimination.
So I loved the theme for the 2022 International Women’s Day: Break the Bias. The only way to break a bias, is to first become aware of them. It can be very challenging to do this, as bias may be implicit and unconscious. They are shaped by our personal experiences, the attitudes of family, friends, our living and working environments, culture and the media. All of us have unconscious biases which influence our perceptions, judgments, decisions, and actions. I encourage you to approach identifying bias with an open mind and heart. Because every bias that’s broken, brings us closer to creating an inclusive society.
Why is inclusion important? For me, it’s boils down to three words.
Every human matters.
One of the ways we recognise the fundamental, intrinsic value of every person, is by acknowledging and respecting their human rights.
This includes their freedom to make choices about their lives, and develop their potential as human beings. Their right to live a life free from discrimination, to have equal access to opportunities, and to feel included and accepted in our society.
Inclusion has been, and will always be, the primary driving value and underlying thread behind the work I do everyday –inclusion is the reason I choose to care for people’s oral health.
My father was born in Fujian, China. As a child he had a fever and was prescribed tetracycline antibiotics. The tetracycline incorporated itself into his chemical tooth structure as his teeth were developing. And it led to permanent black staining of his teeth. This condition can’t be fixed with whitening or bleaching, though he did try that and it has resulted in ongoing severe cold sensitivity whenever he eats.
He moved to Australia when he was 26 years old, excited to start a new life in a country full of freedom and opportunities – not realising how much of a barrier this tetracycline staining would be in pursuing the life he wanted to lead. Watching his struggle had a profound impact on me. I saw how being unable to eat without pain affected his nutrition and general health. I saw how his smile affected the way people perceived him – he was denied employment opportunities and felt socially isolated. He couldn’t share his smile with those around him, he withdrew from people’s judgement, feeling shame about how his teeth looked. This exclusion crushed his self-esteem and with it, his mental health.
So that’s how I learnt, that your mouth is the gateway to your body and your overall health. And your smile, is your gateway to inclusion in society.
That’s why I become a dentist, to empower people to live a full life where they can eat, speak, and smile freely. To open people’s gateway to being included in society by helping them smile, so they can feel socially accepted and find a job, to help them to speak freely without tooth pain so their unique voices can be heard and contribute to our society.
During my pursuit of this mission, I drew upon more of my family’s lived experience – my youngest brother, Arron, was diagnosed with autism and my dear grandmama battled against cancer. I saw the barriers to inclusion into society compounding for vulnerable people who had disability and medical conditions. They faced further challenges due to their circumstance, with their conditions causing higher risk of dental disease, and faced greater barriers to finding a dentist who had the skills to help them. And that’s what drove me to become a specialist in special needs dentistry.
Special needs dentistry involves looking after people with disability.
This includes people with physical, sensory, cognitive, psychosocial and medical conditions. Which currently affects over 4.4 million Australians.
Contrast that with 25 Special needs dentistry specialists in Australia.
Disability touches every demographic. People of all ages, cultural backgrounds, genders, races. It does not discriminate. We are all sisters, brothers, children and grandchildren of people who experience disability. We will all join in that experience eventually through accident, illness, injury or ageing.
Yet how many of us, when we hear the word disability, don’t identify with it. And think, “That’s got nothing to do with me.” When actually the experience of disability, and the unfairness and disadvantage it brings, is very much about us. Disability is a universal experience all humans acquire as we go through life and get older, which most of us would like to do.
Did you see the person’s disability, before you saw the person?
This is what we call an unconscious bias. The first step toward breaking this bias, is to become aware of it. Then, we can change the way we think and speak about it. Language is a powerful way of breaking down bias in our wider society.
Instead of the label “disabled person.” Talk about the person first. A person living with a disability.
Because every person is defined by their humanity, not by their condition.
Something else that contributes to our unconscious bias is the fact that most disabilities are invisible. Such as those related to learning, attention, mental health, or chronic pain. Many people with invisible disabilities are still in the closet due to stigma.
Another way we can break unconscious biases, is through speaking up to make these disabilities more visible, so as to normalise the experience of disability.
It’s interesting how 15% of the world’s population, 1 billion people are living with disabilities – which makes disability the world’s largest minority. And it’s universally known that humans are so diverse, unique and beautifully complex – and yet, it’s common to hear people talk about people without disability being “normal.” Saying “normal” implies that people with disabilities are “abnormal”.
Phrases like this imply that a disability makes a person less than, that disability is negative, a problem to be fixed, rather than a normal, inevitable part of the human experience, that 1 billion people around the world share.
Our society has come a long way, in our understanding of the term “disability.”
The outdated medical model said, disability is something that needs to be “fixed” or “cured”
The social model recognises that disability is created by society. Social barriers, are what disable us – environmental, financial, and attitudinal barriers.
Here is an example:
The Medical Model of Disability and the Social Model
The problem is that the world wasn’t built with people with disabilities in mind, and because of that, the world we live in is inherently “ableist.”
Image source: The Veil of Ignorance by Adam Morse
Just as racism and sexism is the discrimination and prejudice against groups of people based upon race and gender, ableism is discrimination based upon the belief that typical abilities are superior and rooted in the assumption that people with disability require “fixing” and defines people by their disability.
Disability is actually an experience created by society. Not by the condition itself.
Is there anything wrong with the person’s physical condition requiring the use of the wheelchair? Not if the building has a ramp. The condition only becomes a disability when there are stairs.
Example of disability created by the environment
If disability is an experience which is created by society, it means that thesolution is created by society – that is, all of us.
What can be done?
We can’t fix what we can’t see. So let’s start to recognise and become more aware of the environmental barriers that are inherent in our society.
I personally learnt a lot about the physical and environmental barriers people with disability face through a personal passion project I undertook during the start of the COVID-19 pandemic.
There has been support for people with disability to be moved out of institutions to live in the community where they have more choice in how they live, work and play – which has been a wonderful step forward for inclusion of people with disability in our society. It also, highlighted the physical barriers that still exist, when many people with disability were left homeless, as there aren’t enough houses built to be accessible for wheelchairs.
This was the case for one of my patients who uses a wheelchair, he was left homeless, and his sister was building him a house from scratch out of her own pocket. And I remember feeling so moved by that sister’s actions. It also kept me awake that night thinking, but what about the families who can’t afford to build a home? How will they find a place to live? And so I decided, I would build one. Three years later, I self-funded the construction of a universally accessible house for people with disability to live with carer support in the community.
Some of you may be thinking, this sounds a bit out of the scope of my oral healthcare mission, but it actually links back to access to oral healthcare.
My philosophy for looking after my patients is: I’m not here to just look after teeth. I’m here to look after the person the teeth belong to. So if my patient doesn’t have a home to live in, how will they ever prioritise going to see a dentist?
It comes back to Maslow’s Hierarchy of human needs. The base of the pyramid, human’s physiological need of shelter needs to be met, before anything else above that can be addressed.
Maslow’s Hierarchy of Human Needs. Image source: ThoughtCo. The Need to Belong
The solution to oral healthcare access. Ultimately, inclusion is the solution. Including people with disability in society is needed, in order for them to access their basic rights, like oral healthcare.
Through the process of planning, designing and construction of this facility, my eyes were opened to just how many barriers are inherent in our typical house designs, and how much I was taking for granted in this world designed for able-bodied people.
That’s how privilege works. It’s invisible to people that have it. It’s a luxury for me to not think about how I’m going to fit through a doorway or navigate around a corner, or to have to stay at home instead of going to a friend’s house because I can’t access their toilet, or not to worry about how I was going to get up onto the International Women’s Day stage to speak.
Every aspect of the facility was built using Universal Design principles -to create an environment that can be accessed and used to the greatest extent by all people, regardless of their age, size or disability.
Image source: Ageinplace.com
An environment should be designed to meet the needs of all people who want to use it. It’s a fundamental condition of good design. If an environment is accessible and convenient to use, everyone benefits. Not just people with particular conditions, but able-bodied people too.
Wider doorways not only benefit people using a wheelchair, it also helps parents with baby strollers and delivery workers moving furniture.
Wide doorway in the residential facility
Lever door handles as opposed to twisting knobs, help people with arthritis and wrist pain, as well as people coming home from their grocery store, holding multiple shopping bags.
Lever door handle from the residential facility
Imagine a community where every house and building is designed to be universally accessible. It would benefit every person who uses it, and it would remove a lot of the environmental barriers that people with disability face everyday. That would go a long way in helping them get their basic physiological human needs met, which then enables them access to the healthcare they need, to then open their gateway to education and employment, and live to their full potential. Then when more people with disability are living to their full potential – people’s negative biases about what they can and can’t do, start to break down.
The next layer of barriers we can break down are the attitudinal barriers and stigma that exist against disability.
Image source: Solutions for Living by Julie Entwistle
In 2017, I went on my second dental volunteer trip to Cambodia with Australian Health Humanitarian Aid where I cared for people who were orphaned because of their disability. For majority of the patients I looked after, it was the first time they had seen a dentist in their entire life. This experience not only changed the lives of those children with disability, but it also changed my own.
After seeing the stigmas against disability that exist across the world. It cemented my conviction to dedicate my career to serving those who have the greatest need for oral healthcare and who have the most difficulty accessing it. The following year, I started my specialist training.
Dental volunteering in Cambodia
The stigma and negative biases towards people with disability exists not only overseas, but in Australia as well.
So now let’s tie this all back together with oral health.
As I learnt from my father’s experience. Oral health is essential to living a full life and being included in society. When you look at someone, one of the first things you may notice, is their smile. This is even more important for a person who may rely on their smile because they only use non-verbal communication. Think of how this effects social relationships and emotional wellbeing. Think of the flow on effect this has on their opportunities to access education and employment where people with disability already face many societal barriers stacked against them.
But because there are so few special needs dentistry specialists, and so many barriers to inclusion, many people living with a disability, can’t access oral healthcare. Denying them the basic right to live a full life, but also to live the full length of their life.
Australians with an intellectual disability are dying 20 years younger than the general population. A leading cause of their premature death is a lung disease from inhaling dental plaque. I don’t want Australians to be dying from something that’s so preventable. So help me spread the word, I want all people with disability and their parents and caregivers to know, that brushing teeth saves lives!
The next piece of the puzzle, is getting them to a dentist. There are a lot of solutions we can work on at an industry level: upskilling general dentists, training in dental degrees, creating more specialist training programs. But the common denominator to address in addition to each of these solutions, is to break down attitudinal barriers and stigmas attached to disability so that more people are willing to step up and share the care.
So the reason why oral healthcare is important, is because it’s the gateway to inclusion. And the solution to oral healthcare access, IS inclusion.
And inclusion is something that all of us can work towards creating.
You are here for a reason. Who you are matters.
What you say matters, what you do matters and how you choose to serve matters.
Will you choose to serve a vision for an inclusive society, because every person matters?
How can we serve?
Remember. Disability does not discriminate – any one of us could join the disability community at any point in our lives. It’s not about them, it’s about us
Speak up about your experience with disability, or the experience of people you know with disability – to make invisible disabilities more visible and normalise the expeirence of disability.
Get to know more people with disability – positive, meaningful relationships help to reduce stereotyping and unconscious biases. Inclusion begins with a smile. It’s as simple as smiling, and saying hello to a person with disability.
Spread the word! Share the hashtag #brushingteethsaveslives!
Please join me on this revolution for inclusion.
Together we can open the gateway to health, wellbeing, and inclusion in our society.
