Disability Etiquette

Control can be fleeting during an emergency. Environmental factors and patients’ dynamic health status may result in unpredictable circumstances upon arrival by first responders. Patients may be emotionally unstable due to fear, anxiety, and/or pain. When the affected patient also has a disability, the stakes will be raised. Being in control will remain of the essence for both the patient and the provider.  

During emergencies and at all times, the cornerstone need for any patient with a disability is to keep as much control as possible over their life and health. This need will likely be on full display for the EMS crew, regardless of the patient’s age or nature of the situation. Although ensuring safety and following protocols are paramount considerations, EMS providers will also need to effectively communicate with the patient, both to increase the likelihood of a favorable outcome and to validate the control patients seek daily, emergency or not. 

In 2019, as our society gains awareness and sensitivity to the needs of different populations, EMS professionals will increasingly be held accountable for “disability etiquette,” or respectful communication and interaction with people who have disabilities. 

Common Sense and Beyond

Disability etiquette starts with common sense: Treat those with disabilities as courteously and respectfully as you would anyone else. Beyond that it entails measures like speaking directly to them; using “people-first” language that recognizes individuals are more than their disabilities; and not asking questions about the disability that aren’t pertinent to your care.¹ 

“All we ask is that we maintain as much control and choice over our lives as possible, with respect and dignity for our humanity,” says John D. Kemp, a quadriplegic patient who also serves as president and chief executive officer of the New York-based Viscardi Center, a network of nonprofit organizations that provides services that educate, employ, and empower people with disabilities. 

Born without arms and legs, Kemp, 70, is a member of a patient cohort for which he’s spent much of his life advocating. While he’s quick to acknowledge EMS providers may be placed in difficult situations that complicate their ability to communicate with patients experiencing emergencies, he also believes a general set of principles, if followed, can positively impact any incident for patient and provider alike. 

For the billion-plus people worldwide identified as disabled by the World Health Organization, Kemp suggests keeping a focus on the basics. 

“In emergency situations using names, and especially first names, starts the communications correctly,” Kemp says. “Be yourself, be respectful, and don’t underestimate what people can and cannot do. Let the patient know there’s a desire to serve his or her needs in a tone that is courteous, compassionate, and unassuming.” 

Even in an emergency, don’t try to predict specifically what a patient with a disability will want, especially for customer service-type needs, Kemp adds. “Giving us the power to ask for help when we need it is very important to us,” he says. “So people have to think a little bit first about trying to treat everybody the same way.”

Dignity and Respect

As a longtime paramedic, Larry Atteridge, NRP, director of emergency medical services at Natchitoches (La.) Regional Medical Center, agrees fully. Though he recognizes EMS providers will face challenges in these circumstances, Atteridge knows etiquette must remain part of the provider’s thought process. 

“We must always be mindful that this person is someone’s family member, and we must treat this individual with all the dignity and respect we would expect our family to be treated with,” Atteridge says. “The vast majority of patients we encounter probably have some degree of disability, be it emotional, physical, or cognitive, and it’s important to be able to modify your approach to each patient and their particular situation.”

That means being able to listen to the patient and his/her family member(s), focusing on body language, and taking into account surroundings. It also involves not assuming what the patient may be experiencing or what their health history may be. 

“The biggest mistake I see is when providers are not able to conclude in their minds what is going on,” says Atteridge. “Communication with the patient is everything, and if they cannot communicate with you, then you will have to pull out your investigative skills and basic assessment skills.”

Kemp reminds providers, however, to rule out the existence of communication barriers before deciding a family member or guardian is the individual with whom they should be speaking. “Informed consent rules apply in the same way for people with and without disabilities and people who have apparent authority to act in the interests of patients with disabilities who cannot act on their own behalf,” he says. 

Kim Brussell, vice president of public affairs at the Viscardi Center, emphasizes knowing when communication should be directed directly to a patient even when a caregiver or guardian is a party to the healthcare decision-making. “Providers should direct their questions and actions to the actual patient instead of just assuming the person with them has that power,” says Brussell. “The patient many times can respond on their own behalf.” 

Additionally, healthcare providers should remember that one type of disability does not signify multiple disabilities, says Melanie O’Brien, director of communications for the Southeastern Pennsylvania office for Easterseals, an organization that serves individuals with disabilities, veterans, seniors, and their families. “Physical disabilities don’t mean cognitive delays,” O’Brien says. “Having better understanding of mental health and autism spectrum disorder is important. Being mindful of sensory issues can have a big impact.” 

A Two-Way Street

Kemp will tell you 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 accustomed to it. That doesn’t change the fact that providers may be inclined to speak to him in a certain manner, emergency or not. He also knows the nature of any conversation with a healthcare professional may be unpredictable because there may be a tendency for those communicating with him to want to choose their words too carefully and thus offend unknowingly. 

“I know people talk to me in certain ways, especially when I’m riding my scooter and they’re physically looking down at me,” says Kemp, who uses four prostheses every day. “We’re a microcommunications population. We’re listening to how people speak to us, the words they use, and the tone of their voice, and we’re watching how people act toward us physically. All of these microcommunications are coming at us, and if we’ve lived with our disabilities long enough, we’re very perceptive of how we’re being regarded.”

That said, healthcare providers can also remain assured today’s patients have realistic expectations that do not hold medical professionals to a higher etiquette standard. 

“It’s unfair to think medical professionals should be expert to a higher degree than the general public in all areas of disability—it’s an impossibility,” Kemp says. “When it comes to medical professionals, it may be a false assumption to think, You should know better. The disability community is learning we can’t always expect that. We can’t assign a higher responsibility to medical professionals. It’s OK to be honest and sincere about what you don’t know. We just don’t want anything less than equal.”

It Takes Patience

Disabled may mean different things to different people. “When in doubt, healthcare professionals should act with confidence,” Kemp counsels. “Etiquette is a very broad and difficult topic. I think most people have the common sense 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.”

To Atteridge, disability etiquette can be accomplished by always verbalizing to the patient and/or family what the EMS provider is doing and what will promote safety. “We’ve been called because the patient or family has reached a point where they’re asking for guidance and help,” he says. “It’s our responsibility to alleviate these fears or concerns.” 

He also recommends taking the time to speak to all patients to the same degree, even if they appear to not hear or understand. “It will only take a few minutes to get a feel for how far your conversation will take you,” he adds. “If you reach a point where you don’t believe the patient understands, then you’ll need to modify your approach. Always attempt to make eye contact and speak in a compassionate tone and place yourself down on their level as much as possible, so you’re not towering over a patient who may feel intimidated. A calm, cool voice and approach is the sign of a great EMS provider and will pay off most of the time.

“The most important lesson I’ve learned is to never get to a point where you lose your compassion, understanding, and creativity when encountering this patient [population],” Atteridge says. “Always remember that you can be a great technical provider, but if you have no people skills, you are not a great provider, period.”  

Resources

1. Employer Assistance and Resource Network on Disability Inclusion (EARN). Disability Etiquette, www.askearn.org/topics/retention-advancement/disability-etiquette.  

Joe Darrah is a freelance author based in the Philadelphia region who has been covering the healthcare field since 2004. Reach him at jdarrah17@yahoo.com.