We caught up with the brilliant and insightful Andrea Cox a few weeks ago and have shared our conversation below.
Andrea, thanks for taking the time to share your stories with us today Was there an experience or lesson you learned at a previous job that’s benefited your career afterwards?
One of the biggest lessons I’ve had to learn is that my perspective as a disabled person AND a healthcare provider gives me a unique vantage point that is often misunderstood by my colleagues. I see the foundational flaws in our system that most healthcare professionals don’t, the biggest being the rampant ableism built into healthcare.
Ableism permeates our culture, and our healthcare system in many ways is the biggest offender. There are many reasons this is the case but one fundamental problem is that the institutions educating healthcare professionals largely ignore the voices and experiences of disabled people. They instead teach an extremely paternalistic and ableist view of disability that harms everyone who interacts with the healthcare system, including medical professionals.
In a previous job I worked with at risk seniors, many of whom had poor access to healthcare, education, and social support for the majority of their lives. Unsurprisingly, by the time they came to see us many of these seniors had multiple chronic health conditions that were severely impacting their daily life and often led to them requiring increased support. It was very common for us to view these people as “problems to solve”, with the intended outcome being less utilization of healthcare services and less outside support required to live their daily life. Success was measured by a person’s level of independence and was the sole goal, which meant we were often frustrated when a person “wouldn’t” follow the team’s recommendations to get them there.
What we consistently missed was how that person was measuring their own success. With additional outside supports were they now able to engage in their hobbies and social activities that were previously impossible because the demands of daily functioning used up their entire bandwidth? Or flared a chronic condition to the point where they were unable to leave their home? Or utilized their entire day’s worth of capacity leaving none for anything besides simply surviving?
We often assumed people that were not striving for total independence when we deemed that “within their capability” were “lazy”, “non compliant”, or demonstrating “learned helplessness”. Some of these instincts come from an honorable place, but underneath there lies a fundamental misunderstanding of disability. We held in our minds a vision of an able body as the gold standard that everyone should be working towards, regardless of factors that might make that goal impossible or even unwanted by many disabled people.
We viewed disability as a brokenness, not as simply another way of being human. Which leads us to feel an intense need to “fix” people in ways they don’t need/want. And because of this view, we ignore the reality that most people with lifelong chronic conditions have support needs that have gone unmet their entire life for a variety of reasons. Instead of working to determine these support needs and meet them, we seek to mold their life into our picture of “health”. Despite some healthcare professions moving towards becoming more patient centered in recent years, we refuse to view disability as an acceptable way of being human.
As one healthcare provider I cannot fundamentally change the entire system, but I’ve learned I can use my unique perspective as both a provider and a patient to call attention to some of the harms our healthcare system is causing disabled folks. And I can use this understanding to help me challenge my own ableism when engaging with my patients. This helps me to ensure I don’t continue to perpetuate harm and can provide care that actually heals.
As always, we appreciate you sharing your insights and we’ve got a few more questions for you, but before we get to all of that can you take a minute to introduce yourself and give our readers some of your back background and context?
Hi, I’m Andrea (she/her), a licensed Occupational Therapist in Colorado. I’m a hypermobile, neurodivergent, disabled Occupational Therapist who helps folks build sustainable lives in a world that wasn’t built for us. You’ve seen physicians, physical therapists and psychologists, yet your day to day is still a struggle.
That’s where I come in!
Bridging the gap between the medical and the practical, I can help you adapt your life to your unique brain and body so that you can live a sustainable and meaningful life on your terms.
Growing up I was constantly in pain. But as the age old EDS story goes, I was gaslit by medical professionals who confidently stated there was “nothing wrong with me.” I eventually got an hEDS diagnosis at age 19, but was frustrated with how little knowledge there was among medical professionals to help me adapt my life to my new diagnosis. As I gained more associated diagnoses through my 20’s (MCAS, POTS, ME/CFS, etc) I continued to attempt to live a “normal” life, trying to ignore my chronically ill body so I could work and play at the pace of everyone around me.
I worked my way through school, eventually graduating with my master’s degree in Occupational Therapy from University of Oklahoma in 2015. Driven by my deep desire to offer understanding and compassionate care to people with invisible disabilities who were falling through the cracks of the medical system, I spent 8 years working in mainstream healthcare. But as I entered my early 30’s I burnt out. My life was feeling deeply unmanageable and my diagnosed chronic illnesses weren’t explaining the whole picture. All I knew was that I couldn’t keep living this way.
As many late diagnosed neurodivergent folks do, I stumbled upon neurodivergent social media creators and began to see my life experience mirrored in a way I had never seen before. I knew I had found the missing piece. Armed with this new knowledge, I quickly realized that despite the fact that my day job was helping people adapt their lives to their disability, internalized ableism had kept me from applying any of this knowledge to my own life. My deep burnout was a clear sign from my body that attempting to live as a neurotypical, able bodied person was NOT working and things had to change. So I set out on a mission to use my experience as an OT to completely overhaul my life, and over time I slowly started to heal. I made countless changes to my everyday life, big and small. I left my mainstream healthcare job and began to create a work life that both utilized my strengths and accommodated my body and brain’s needs.
Some important principles that I strive to embody in my work:
You know your body best. Healthcare providers are there to come alongside you and provide guidance, but ultimately you are in charge of you!
All of my recommendations are just that—recommendations. If you try something and it doesn’t work for you, great! That’s information we can use to find a better solution.
Our bodies heal best when we remove the shame around how we show up in the world. Chronically ill/neurodivergent folks have often been shamed for being “high maintenance” and are therefore often hesitant to implement any changes in their life that might worsen that perception. I am here to remind you that you DESERVE to be accommodated.
I celebrate neurodivergence, am disability and LGBTQIA+ affirming, and uphold body liberation/HAES.
I’m committed to practicing from a foundation of anti-racism and cultural responsiveness and seek to continuously learn and grow.
That brings me to what I hope to offer you. Sadly, for folks living with disability in this highly ableist world, the only way to survive is to craft a life that looks very different than the “norm.” As I have experienced myself, this process can come with a significant amount of shame and grief (both internal and external), but I promise there is freedom and aliveness on the other side! It’s exceedingly difficult to do all this alone, so I hope to be your partner in some of the practical aspects of building your joyful and sustainable life!
We often hear about learning lessons – but just as important is unlearning lessons. Have you ever had to unlearn a lesson?
One of the primary things I had to unlearn was the belief that I, by the inherent nature of having a graduate degree in a medical profession, know what is best for my patient’s body more than they know what is best for themselves. As an Occupational Therapist now almost a decade into my career, my understanding of my role is altogether different than when I began practicing.
We have this general sense of medical professionals as being the gatekeepers of our health, dispensing diagnosis and treatment with some sort of all knowing hand and deserving of unquestioning respect. However, as any chronically ill/disabled person will tell you this could not be further from the truth. Most of us have suffered through years of gaslighting and misdiagnosis, often getting sicker in the meantime.
There is complexity and nuance to this belief, because healthcare professionals do go through rigorous education to prepare us treat our patients in ways that are safe are evidence based. However, the crucial piece we often forget is that our patients are the ones holding the key to their own healing. They hold the information doctors need to make an accurate diagnosis. They hold the intuition around why they are struggling with a certain task and what supports they need. They know that something is feeling off in their body. They hold ALL the answers, we just have to learn to trust our bodies (and by extension our patient’s bodies) enough to let them speak.
Putting training and knowledge aside, what else do you think really matters in terms of succeeding in your field?
One practice that has made me a much more effective Occupational Therapist is working on my relationship with my own body. Most of us walk around our entire lives without a real, trusting connection with our own bodies. We live in a world that almost requires disassociation for survival. There’s a baseline level of distrust between us and our bodies and even though we can’t quite pinpoint the source we continue to listen to its message. And yet, for those of us in professions where we are interacting with bodies on a daily basis, this is a huge barrier to providing effective care.
If I can’t trust my body to tell the truth, how can I trust yours? And furthermore, how can YOU trust ME to lovingly, kindly and accurately interpret the signals your body is sending? Whether it be pain, anxiety, or nausea-our body has a myriad of ways to tell us something isn’t right or safe. But if we subscribe to the dominate cultural narrative that our bodies are inherently bad and we need to do everything in our power to “fix” them, we can miss extremely important communications.
This isn’t really our fault- we were never taught how to interpret these signals, especially so if you were trained in the mainstream healthcare system. “Symptoms” are things to be treated or fixed, annoying quirks of being in a body that we will do anything to eradicate. This had led to a myriad of treatments that we know don’t actually help resolve anything long term, but that rather function as an attempt to temporarily decrease suffering. Which is definitely a noble goal in and of itself.
But as an Occupational Therapist, my ultimate goal is to help people come back to themselves and their bodies so they can determine what they want and need to thrive. And I’m discovering this is extremely difficult to do if I have not done the work of making friends with my own body. Coming to my patients present and connected to myself (and by extension them), has been the key to successfully helping people build joyful and meaningful lives on their terms.
Contact Info:
- Website: www.hypermobileot.com
- Instagram: @hypermobileot
- Linkedin: www.linkedin.com/in/hypermobileot
- Other: Tik tok @hypermobileot