As medical professionals become more aware and sensitive to disabled patients, communication is finding common ground.
Despite an increasing trend to avoid labeling those who are different from us, society as we know it in 2019 still can’t seem to stop its collective self from attempting to define everyone to some degree. We might be “blue collar” or “independently wealthy” depending on our income and/or profession. We may be a “minority” or “underserved” based on the color of our skin or the availability of certain resources in our geographical region. Some of us may feel the need to “identify” ourselves as a lesbian, gay, bisexual, transgender, transsexual, queer, questioning, intersex, asexual, ally, or pansexual related to some of our lifestyle choices. And of course, almost all of us are surely a democrat or republican based on our political beliefs. Then there’s our healthcare status, by which, clinically speaking, we may be “diabetic” or “on the spectrum.
For more than 1 billion people worldwide, they’re defined as “disabled” by the World Health Organization. And of all the definable statuses that society may have to characterize us, the use of the term disabled certainly seems one of the most cumbersome to define. Just ask Major League Baseball, as a recent example. In February, league officials confirmed that all references of the “disabled list,” the ledger of sorts for tracking those athletes unable to play for a (typically) specified period of time would henceforth be known as the “injured” list. A designation that existed more than 100 years in the sport suddenly became no more following a decision initiated largely on the strength of requests from advocacy groups and a desire by league officials to display sensitivity to the general disabled population, which is believed to be rooted in an attempt to end an unintended misconception that portrayed people with disabilities as “injured” and therefore not able to participate or compete in sports.
An example that represents only a shred of the potential political correctness of such a delicate situation, it no doubt reinforces the mounting evidence that “even though we may have different physical, cognitive, or other types of issues, we’re equal and are all on the same level and due the appropriate amount of respect that you would give to anyone else,” said John D. Kemp, Esq., president and chief executive officer of the New York-based Viscardi Center (hyperlink to https://www.youtube.com/watch?v=HV0kC2Iw0Lc), a network of nonprofit organizations that provides services that educate, employ, and empower people with disabilities. One who was born without arms and legs (otherwise described as a “quadriplegic”), Kemp, 70, is a member of a patient cohort that he has spent much of his life advocating for. By his own terms, he does not “live with a disability.” Nor is he “confined” to a wheelchair. He simply has a disability and utilizes a wheelchair. He has done so his whole life and is absolutely accustomed to it. But upon entering the office of any healthcare provider, this lifelong circumstance may be a great unknown to that healthcare professional. And so the nature of any and all conversations between professional and patient may be a bit unpredictable because there may be a tendency for those communicating with him to want to choose their words either too carefully or haphazardly and subsequently unknowingly offending.
“I know people talk to me in certain ways, especially when I’m riding in my scooter, and they’re physically looking down at me,” said Kemp, who uses four prostheses every day. “We’re a micro-communications population. We’re listening to how people speak to us, the words that they use, and the tone of their voice, and we’re watching how people act physically toward us. All of these micro-communications are coming at us and if we’ve lived with our disabilities long enough we’re very perceptive of how we’re being regarded.” Also an informed and uber-aware society in 2019, there is a growing emphasis on what is commonly known as “disability etiquette,” or a manner of speaking that refers to respectful communication and interaction that, first and foremost, relies on common sense to guide interactions and behave in the same courteous and respectful way with individuals with disabilities that we would with anyone.1
But that’s only where this definition starts it seems. “Etiquette is a very broad and difficult topic,” Kemp said. “I think most people have the common sense now to understand that people with disabilities are peers and equal, [but] people make a lot of assumptions about us. So it sometimes takes patience in these communications.”
Ask Melanie O’Brien, the director of communications for the Southeastern Pennsylvania office for Easter Seals, an organization that has served individuals with disabilities, veterans, seniors, and their families in a variety of ways, and she’s inclined to see disability etiquette also as helping to change the way the world views and defines disabilities. “We need to see the whole person, not just a disability,” O’Brien said. “We also need to have a better understanding of ‘invisible’ disabilities, such as mental health and autism spectrum disorders, and the needs and challenges associated with them.”
Part of the challenge revolves around the notion of a disability and that certain people may or may not see themselves as disabled and that disability may mean different things to different people. “Disability is new all of the time,” he said. “People age into disability, 83 percent of the population of people with disabilities acquired their disability after birth – by accidents and illnesses and injuries.” Still, the mere talking about disability etiquette is significant progress enough. “It’s a starting point, and it’s all about education and identifying resources for people,” he said.
For healthcare providers who may be curious as to how they might better foster a comfortable presence when communicating with this patient population and practicing appropriate etiquette, Kemp suggests that the advice may be simple despite the difficulty of identifying a specific disability language. “Be yourself, be respectful, and don’t underestimate what people can and cannot do,” he said. If that in and of itself seems like it contributes to the broadness of the concept, well there are some specifics to adhere to as well, according to Kemp. For instance, it is ok and possibly advisable to let the patient know that there is a desire to serve his or her needs but a bit of unfamiliarity in how to do so in a tone that is courteous, compassionate, and unassuming. To that point, the healthcare provider will not want to predict specifically what a patient will want or need from the provider, especially as it relates to a customer service approach. “It’s ok, to be honest, and sincere about what you don’t know,” he said. “This world is made up of so many different types of people today, even though we try to find the common denominator. It’s ok to be sincere in your request for help to understand how to do right by the patient. All we ask is that we maintain as much control and choices over our lives as possible, with respect and dignity for our humanity. The locus of control over what happens to a person with a disability rests with them, so it’s about being respectful of the person’s needs.”
This can correlate to asking the patient if he or she is ready to go to an exam room as opposed to attempting to wheel them or escort them there. Asking if the patient wants assistance can also go a long way, Kemp said. “As long as you ask it in a way that is compassionate and is not just physically doing something without asking for approval,” he continued. “If there’s a smile on your face, saying something like ‘I want to be able to serve your needs, so please help me to understand if there’s anything that I can do and should be doing’ in a tone that says, ‘we want you here and we welcome you here, and we’re trying to customize our services to meet your needs,’ [works well].” Being mindful of where the communication, regardless of how appropriate that communication is, also remains important. “You’ll want to respect the dignity of the individual and not ask certain questions that become a public disclosure,” Kemp said. “[The patient will] tell the medical professional they have a disability, but they don’t want to tell everyone in the waiting room. That is something that should be done in the privacy of a patient’s room if it’s done in a discreet manner where it’s not embarrassing to the individual with the disability and it’s sincere.”
Additionally, healthcare providers should remember that one type of disability does not signify multiple disabilities, O’Brien said. “Physical disabilities don’t mean cognitive delays,” she continued. “Having a better understanding of mental health and autism spectrum disorder is important. Being mindful of sensory issues can have a big impact.” Similarly, Kemp and Kim Brussell, vice president, public affairs and marketing at Viscardi Center, stress that knowing when communication should be directed directly to a patient even when a caregiver or guardian is a party to the healthcare decision making is also an important consideration. “Providers will always want to direct their questions and actions at the actual patient instead of just assuming that the person with them has that power,” said Brussell. “The patient, many times, can respond on their own behalf.”
A Two-Way Street
Healthcare providers should also remain assured that today’s patients should also bring with them realistic expectations that do not hold medical professionals to a higher etiquette standard “just because.”
“It’s unfair to think that medical professionals should be expert to a higher degree than the general public in all areas of disability – it’s an impossibility, it just doesn’t happen,” Kemp said. “When it comes to medical professionals, it may be a false assumption on the part of the person with a disability for them to say, ‘you should know better.’ The disability community is learning that we can’t always expect that. We can’t put a higher responsibility on the part of medical professionals, because that’s unrealistic. We just don’t want anything less than equal.”
Many times, the relationship may hinge on a shared awareness of the circumstances combined with an interest in being educated. Somewhere between the need for awareness and the pursuit of knowledge is a common ground that all patients and their healthcare providers should attempt to find for the benefit of all involved, Kemp said.
“Most of us (patients) carry around an awareness that we have to do some educating, and we have a responsibility in this binary, mutual relationship, this communication path,” he continued. “Both the patient and the professionals have a responsibility to approach this as a form of education. For the most part, a few questions so that they don’t offend are to be expected. And a person with a disability can direct the individual to how they want to be helped and assisted.”
Additional disability etiquette tips can be found here.
1. Disability etiquette. EARN. 2019. Accessed online: www.askearn.org/topics/retention-advancement/disability-etiquette