Healthcare is a topic that has been in discussion a lot lately in our political climate. Whether you are on one side or another of the debate, we all can agree that healthcare is something we all wish to have easy and affordable access to. Paying attention to our health is vital to our personal care. Thinking about my role within this entire system I have some thoughts.
Soon, I will be beginning my service as a volunteer medical assistant at a local free clinic. As a pre-med student, I am absolutely ecstatic to work for an organization that is committed to the ideal of healthcare as a basic human right. Last night, I was filling out my paperwork and completing some pre-orientation training. At the end of learning about the incredibly comprehensive care this small clinic offered to approximately 1,600 patients, I reached the last section of training: health care considerations for gender non-conforming patients. Often, this cohort faces a lot of difficulty accessing care because of their gender expression and how it relates to their bodies. Gender non-conforming patients are often discriminated against, misunderstood, disrespected, and are at-risk for higher incidence of certain medical issues that they are less likely to get treatment for because of the way they have been treated by healthcare providers in their lifetime.
I was extremely pleased by this training because it is absolutely necessary in ultimately reaching the goal for empathetic, quality healthcare for all. However, it got me thinking, what about all non-conforming bodies? Specifically, what about the community of people with disabilities (PwD)? What challenges do they face accessing healthcare and as a future provider, what can I do to educate myself and address these problems?
As I began my investigation, I encountered a prevailing attitudinal problem in accessing quality care for the PwD community that held parallels with the gender non-conforming community: the perception that your non-conforming body is the primary and predominant factor in diagnoses and treatments and that you are too difficult of a patient to treat. In no way is this the only barrier to access. One would have to live in a complete vacuum to not be aware of the debate on healthcare and the affordability of healthcare in this country, let alone the myriad of other barriers to access. However, I’d like to focus on this barrier because of it’s compelling social and cultural implications in how we perceive non-conforming bodies.
In the transgender community, activists have named the tendency for providers to attribute all their medical complaints to the fact that they are trans “trans broken arm syndrome”. It comes from a hypothetical scenario: a trans person goes to the emergency room for a broken arm and upon realizing their patient is trans, the provider ignores their arm altogether, concentrating all their attention on the fact that they are transgender[1].
In a qualitative study conducted by Dr. Mary Ann McColl (et. al.) on Physician Experiences Providing Primary Care to People with Disabilities, her team of investigators found that one-fifth of the primary care physicians participating in their study held a similar perception to their patients with disabilities[2]. This can cloud the judgment of the physician’s diagnostic reasoning by not properly exploring alternative causes to their patient’s complaints. It can also be incredibly insensitive to someone’s whole being. What a patient with a disability may perceive as simple a state of being, as they have simply lived with their disability and learned to adapt successfully to it, the provider perceives it as inherently illness. Disease does in fact coexist with disability but it is not an implicit condition of being disabled.
An incredible and compelling anecdote of these contradictory attitudes can be found in the neurologist Dr. Oliver Sacks’s case study of a man who has restored sight after being blind from the age of 10-50 titled To See and Not See. Virgil was suddenly able to see for the first time in his life after strong encouragement from his fiancee to pursue corrective surgery that suddenly became an option following the discovery of a misdiagnosis from when he first lost his sight. Virgil’s world descended into neurological chaos after the surgery in a strikingly similar fashion to the only 20 other cases ever recorded[3]. Vision was overwhelming and confusing because Virgil was astutely adapted to navigating the world without sight. Dr. Sacks explains that seeing and sight are two separate things. One must learn to see with the eyes and Virgil was no exception. He often found himself closing his eyes and reverting back to tactile sensing instead of dealing with the menagerie of confusion that was the totally foreign and new perception of light and shadow[4]. In fact, Virgil expressed what could be interpreted as regret, explaining how he experienced much more fear with sight than without it[5].
This anecdote to me truly illustrates the mental block that disability can present to providers. I am not speaking on behalf of the whole community as I’m sure depending on an individual’s perception and circumstance that they may very well understand their disability in the context of illness. However, my point is that this is not always the case and healthcare providers should know that many people with disabilities perceive their condition as simply part of them- a state of being, not an illness. I for one have reached that point with my epilepsy because it is a mild and rare form that has resisted all treatment. I know what my baseline is and if I experienced a change in it, I would seek medical attention. It would be disheartening if I found that my provider did not listen to me or trust that I understood what was normal for me and didn’t take that into consideration in determining a treatment plan. In fact, beyond being disheartening, it could lead to poorly informed conclusions and ill-conceived treatment.
Dr. Mary Ann McColl’s study also found the providers participating in the study felt unprepared to give a proper examination of their patients with disabilities and experienced their patients teaching them about their bodies[6]. Many participating physicians expressed enthusiasm for this learning experience and how they felt it was very important to them.[7] However, in the same vein of thought, some of the participating physicians in Dr. McColl’s study were hesitant to take on patients with disabilities because they saw them as too difficult[8]. The need for patients to teach their physicians is common in trans patients as well. According to the National Center for Transgender Equality, over half of all trans people have to teach the fundamentals of trans health care to their providers[9]. This points to a serious deficiency in education and training, which can be mind-boggling for the patients- physicians are supposed to be the experts on their human body, not the other way around.
I think some educators and providers might see this training and awareness as taxing and perhaps, extraneous but I implore those in charge of training, receiving training and in practice to please consider the implications of more inclusive care for both patients and providers. This is bigger than us and our egos. Healthcare providers are entrusted with the most vulnerable parts of a person’s being and in order to uphold the integrity of the profession we must zealously guard and strengthen this trust. Being informed and trained to properly examine and treat a body-diverse patient population reinforces the trust they have in us.
Is it not natural to doubt the years of training and expertise that comes with medical training if a person must explain their body to you? By increasing awareness, improving medical training, taking personal responsibility for extra training, and truly listening to the patient with empathy and respect, we are not only ensuring patients have the best care that providers can give, we are also helping to maintain (or establish for the first time) their trust in the biomedical model as a whole. To do otherwise is a disservice to everything we have sacrificed for this role and as my journey continues, I am well aware that the sacrifices are great. We have nothing to lose in becoming more informed but a lot to gain and take back in terms of respect and trust. I hope that learning to more effectively treat anyone who has a non-conforming body will become a vital aspect to our training. Then one day, no one will hesitate to seek medical attention out of apprehension, but instead trust and respect their team of healthcare providers and feel supported, affirmed, and cared for.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[3] https://www.newyorker.com/magazine/1993/05/10/to-see-and-not-see
[4] https://www.newyorker.com/magazine/1993/05/10/to-see-and-not-see
[5] https://www.newyorker.com/magazine/1993/05/10/to-see-and-not-see
[6]https://www.theguardian.com/society/2016/may/03/transgender-healthcare-doctor-oneonta-new-york-carolyn-wolf-gould
[7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[8] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645198/#R13
[9]https://www.theguardian.com/society/2016/may/03/transgender-healthcare-doctor-oneonta-new-york-carolyn-wolf-gould