Ever since third grade, the octopus has been my least favorite animal. Not that any octopus ever did anything to me; on the contrary, I’ve only seen one in an aquarium, and I’m sure it took no special notice of me, nor I of it. In fact, given their keen intelligence, octopi should actually command some notion of respect within the animal kingdom. That said, my mind has chosen to overlook this fact and focus instead on the image of a pale, purple, cartoon octopus silently staring back at me from the ceiling of a postoperative recovery room.
My story doesn’t begin in third grade; rather, it starts when I entered the world. Born with proximal femoral focal deficiency (PFFD), a birth defect characterized by a shortened femur and dysplastic acetabulum, I have lived my entire appreciable life — from preschool to medical school — as an amputee. Given the number of letters in the name of my condition, it’s safe to assume that it’s relatively rare. Consequently, the typical conservative response from many physicians was not to offer options, but to predict I’d never walk well.
As I grew up, the profound effects that PFFD would have on my life made themselves increasingly evident. Many stereotypical childhood goals, such as being an astronaut or playing in the NBA, were off the table (not that, at 5 feet 10 inches, the latter would’ve been there anyway). Even the little things that most people take for granted — fitting in the back seat of a car, learning to ride a bike, or walking through a store without being subjected to the incessantly curious eyes of a 5-year-old — provided their own inherent challenges.
And then I was introduced to the aforementioned octopus. At the age of 9, I underwent the third in a series of rotationplasties that have since allowed me to walk. At some point in the post anesthesia care unit, the team severely underestimated my analgesic needs. With pain searing through my hip and everyone hastening to get things under control, all I could do was stare at the ceiling. On that ceiling, an octopus stared observantly back at me. As to why an octopus with eight “legs” adorned an orthopaedic hospital for patients with a general lack thereof, I will never know. But, focusing on the octopus, a number of questions ran through my mind. Why was this happening to me? Would I ever be normal? Was all of this worth it?
These are the questions I reflect upon when I consider where I want to go, what I want to do, and who I want to be. They are, in part, what drove me toward a career in medicine, toward a career in helping others with problems like my own. But to simply view my disability as a catalyst for a career choice is to ignore the countless obstacles, pains and failures that have accompanied it. These are experiences I wish I had never encountered, yet every cloud has a silver lining, and these experiences have affected my views regarding disability, patients and how I wish to approach clinical practice in the future.
Although I use it for the sake of communication, I do not, in and of itself, like the term disabled. I don’t wish to argue against its context because it would be a lie to claim that there was nothing I couldn’t do given my condition. The term emphasizes the entirely wrong aspect of a person with a disability, focusing on what he or she cannot do rather than on any other defining characteristic. This emphasis speaks volumes on the image of disability in society.
To this day there is a certain stigma — sometimes obvious, sometimes not — regarding disability. Society, with its use of the term disabled, demonstrates a fondness for characterizing people by their medical conditions. Ray Charles, one of the most talented musicians of his time, is known as a wonderful blind musician. The image of Stephen Hawking, one of the most impactful physicists of this era, is intimately tied to that of his assistive devices. None of these descriptors are inherently wrong; however, it is as if the lives of those who live with disabilities are defined first by their disability and only subsequently by the rest of their person.
What makes this emphasis negative is not the emphasis itself but the damaging stigma subconsciously tied to it. As a society, we often think that such a connotation does not exist, but the evidence says otherwise. During the last presidential election, controversy erupted surrounding the alleged public mocking of a reporter for his physical disability. In 2016, the movie “Me Before You” garnered significant backlash from various groups due to its portrayal of assisted suicide for someone living with a disability. Are these the types of statements that we want to make to the disabled community?
While this stigma may appear isolated to specific events, it has overarching effects on the people with disabilities. For all people of working age, able-bodied individuals have an employment rate approximately twice that of those who are not. Additionally, those with disabilities who are employed earn a significantly lower median salary than those without disabilities. Certainly, it could be argued that many jobs require a definite level of physical skill that some individuals with disabilities may not have. However, according to the “Americans With Disabilities: 2010” census report, education — which forms the foundation upon which many people build their careers — follows the same trend, even when only considering those with “non-severe” disabilities. This occurred in spite of the Individuals With Disabilities Education Act, which “[ensures] services to children with disabilities throughout the nation.”
But what do physicians and other health care professionals have to do with this? Admittedly, it is impossible for a group of people to change the subconscious outlook of a nation immediately. To be fair, health care professionals do more than most to help. We provide prosthetics to patients with amputated limbs, treat cerebral palsy with baclofen pumps, and administer disease-modifying therapies for multiple sclerosis. While these innovations have enormously improved the lives of many individuals, this is only half of the battle. Prosthetics don’t fix workplace discrimination. Baclofen pumps don’t absolve a lack of educational resources. Disease-modifying therapies, as useful as they are, don’t improve access to health insurance. Much of what we do, as a medical field, is targeted toward our patients’ medical conditions. In treating these conditions, we often forget to consider the rest of the patient’s life. Yet it is that aspect that often needs treatment the most.
Addressing this stigma is difficult, and it is (or should be) the subject of further debates about approaching patients with disabilities. As we treat underlying medical conditions, we must help return patients to “normal” life. In children, this means not only securing access to equal educational resources but also inspiring the personal confidence that they can succeed in school. For adults, this means not only ensuring that they are capable of working but also instilling the desire to contribute to society and the confidence that they can make a difference. In all cases, this means ensuring that the image of disability is secondary to that of someone’s accomplishments, aptitudes and character.
My image is, despite my best wishes, intimately tied to my medical condition. Among strangers, I am not a medical student, or an engineer, a researcher or a college graduate — I am just an amputee. But I suppose that, in my own mind, I feel somewhat the same way. I will always face challenges, both old and new. These challenges are central to what defines me as an individual, and they have shaped me both as a person and a professional. I am often reminded of the questions that ran through my head while staring at the octopus above me, just as I reached the age at which I could understand what lie ahead. I will never have an answer as to why I was the one afflicted with PFFD but, whether a simple genetic mutation or part of God’s larger plan, it doesn’t matter. I will never be “normal,” in the strictest sense of the word. But was it all worth it?
I am not thankful that I was born with a disability. I do not celebrate it, nor is it something that I would wish upon anyone else. That said, it is the proverbial hand I was dealt, and there’s no arguing with the dealer. All I can do is face it, move forward and take lessons from my experiences that I would not have learned otherwise. These lessons have shown me the challenges that thousands of patients face each day. It is these challenges, and the stigma involved, that we must actively address as a medical community to continue to improve the lives of those living with disabilities. Then, and only then, can we truly say that we have provided the best possible care.
Jonathan Dallas is a Vanderbilt medical student. This article originally appeared in JAMA. 2017;318(19):1867-1868. doi:10.1001/jama.2017.15711. Copyright 2018 American Medical Association. All rights reserved.