A Wave of Emotions

Like Effie and many rare parents, I keep one eye on the media and the latest developments in the rare disease and disability world. Recently, a New York Times article by Gina Kolata caught my eye, and the title drew me in: “These Doctors Admit They Don’t Want Patients with Disabilities.” In her piece, Kolata summarizes and highlights findings from a recent qualitative study by Lagu et al. and published by Health Affairs called, “‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities.” The study, which I had already read with a heavy heart prior to seeing Kolata’s follow-up article, captures some brutally honest comments from physicians who admitted to dreading and even refusing to accept disabled individuals in their practices.  It also exposes a variety of painful realities including admissions from physicians that they do not want disabled patients for a variety of reasons including fear of litigation, inconvenience, inadequate facilities, and attitudes of entitlement.

For a community that already suffers from rejection and marginalization on a regular basis, the physicians’ statements about the disabled patient population cut to the bone.

In response to the study, Tara Lagu, a disabled physician and professor of medicine stated, ““It was so shocking, I almost couldn’t believe it.” My thoughts were, Well, Dr. Lagu, I can believe it. No problem there. I’ve not only read and heard about this rejection from others in the community, but as a mother of a now-adult son with ASMD, a multi-systemic and disabling genetic disease, I have witnessed it firsthand.

As I read Kolata’s article, I felt a wave of emotions which transformed from anger to outrage to disappointment to sadness. My darker nature first replied to the study participants with, Just you wait. Just you wait until your turn comes to see your mother, father, child or grandchild, your wife or your husband treated badly or refused care because of their disability. You’ll change your tune then.

But no sooner did that spiteful thought come than did I stifle it. Any criticism I make needs to be accompanied by my willingness to turn the mirror back onto myself, to put myself in the positon of the “other,” and see where my own biases, personal history, and character flaws fog the lenses through which I interpret the conflict.

And so I did. I must admit, I can understand some of the frustration physicians experience when it comes to meeting the expectations of both their patients and their employers. As a teacher, I, too, have become overwhelmed at times by the stated and unstated expectations that teachers become armchair psychologists who can assess and address the psychological needs of not one but dozens of individuals each day. I am at times frustrated by the unrelenting pressure to continuously redesign my syllabi with as yet unproven strategies in order to accommodate and mitigate the various traumas and mental health challenges students have experienced. At different schools I have witnessed entitlement behaviors and words that say, you owe me, sometimes emerging quite naturally from the hurtful wounds of marginalization and trauma, and sometimes from a belief system that says that they are owed something above and beyond in compensation for how they and their communities have been unforgivably treated in the past. I thought about the mental weariness that comes with processing strategic decisions about the curriculum I must make out of ethical and moral obligation, decisions that I know will consume time and energy I might have devoted to other pursuits. And my decisions about teaching aren’t even close to the sort of life-preserving decisions physicians must make multiple times daily. Teachers are generally not sued for their unsuccessful attempts to teach skills, nor are their students’ very lives placed in jeopardy when we don’t teach something quite right.

I thought about my appointments with my son’s doctors, and how I might come across as ungrateful or even slightly hostile, a result of my trust issues and lacking any signs of the hero worship and reverence that some physicians are accustomed to and even unconsciously expect.  I thought about my own unconscious tendency to engage in transference, or projecting my emotional baggage from my fraught history with my son’s healthcare onto the new healthcare providers who really don’t have it coming. I thought about the pressure of the workload many of these physicians are put under, similar to what a relative of mine, an attorney, has experienced for years. His corporate employer treats him and the other staff attorneys like cogs in a money-making machine, making unreachable demands on their time and expecting them to do the work of three people in an insanely short amount of time and with inadequate resources. These corporate employers bleed their professional employees dry until they burn out and quit in the name of self-preservation. Have our physicians become similarly exhausted by the same corporate value systems and business models?

I acknowledge the imbalance of power in the doctor-patient relationship, and state with 100% conviction that no one deserves to be treated badly, and every human being deserves competent and respectful medical care. We must continue our efforts to change perceptions and policies that result in the exclusion and marginalization of disabled individuals as they seek medical care, a basic human right. But it is also fact that disabled individuals, their family members, and physicians are all human beings. No single group of human beings exists that is completely free of character flaws and bad behaviors rooted in frustration, hurt, self-centeredness, and prejudice. No single group of human beings, in this context physicians, should be silenced when it comes to voicing their struggles to live up to the demands of their profession and to satisfy both their patients and their employers, both of whose expectations can be extremely high and in many cases polar opposites.

So when I saw that Effie had written a post about Lagu et al.’s study asking what we had to say about it, here is an excerpt from my reply:
While the article is sad, it does something important. It reveals truth. Once the truth is exposed, then the truth and all its implications can be dealt with not solely with anger and feelings of rejection, but with compassion for the one who is lacking in compassion. The article made me reflect on my own behaviors and frustrations, and what it is like to be the "other" from the perspective of a parent, daughter, and aunt of someone with disabilities, and also as a teacher who has occasionally felt frustrated with some of the entitlement behaviors I have personally witnessed and perhaps even been guilty of myself.

In order to drive positive social change, we must work to understand the truth, and then we can hopefully work together not as adversaries, but as collaborators, each fully willing to listen to and understand how and why the other feels and behaves the way that they do. 

So in short, I ultimately saw the study referenced and the article as positive, because once the truth is fully exposed, we can better plan our approach to fostering increased empathy on both sides, creating better healthcare policy, and not just equitable access, but compassionate healthcare access, for all.

The study offers valuable and useful-- albeit painful-- information. It is my hope that the study and Kolata’s article will stimulate productive conversation that invite a Rogerian approach to conflict resolution, one in which both sides are fully and actively listening to the other as together we work towards resolutions. That is essential, because if we continue to exist in a point of tension and respond only with more outrage and anger or defensiveness, we will not make progress. Moreover, if we do not make a concerted effort to recognize each other’s humanity and work together to fight for some reasonable solutions, then two outcomes are almost assured. First, more and more burned-out physicians—especially those who care about the disabled-- will leave the field for the sake of self-preservation. Second, the medical community’s subtler, off the radar tendencies to engage in discriminatory and excluding practices will likely increase, leaving much of the disabled community even worse off than they already are. From that position, both the study and the article serve as a valuable wake-up call for industry-wide education and policy change.

 -Kara Ayik