In an introduction to her video, Cooking with Brain Injury, Cheryl Green, MFA, MS, explains that people with brain injury have difficulties with communication including confusion, going off topic, and forgetting. “We handle the changes better when we laugh,” she says. Like me, Cheryl has a master’s degree in speech-language pathology and is a person with brain injury.
But to the person without brain injury, watching Cheryl’s humorous videos, Cooking with Brain Injury and Friending with Brain Injury, can feel uncomfortable as the performers act impulsively and go off on tangents. And that’s the point. She hopes to provoke the person without brain injury to think about what it means to communicate with a person with brain injury.
The fundamental nature of brain injury is disordered communication. Because axons are damaged, smooth and quick brain networks are disturbed. Messages that travel along fibers encounter blips of engagement and disengagement that manifest as inadequate regulation and control of verbal and non-verbal communication and look like inattention, loss of memory, bad behavior, and poor judgment. It’s so aggravating! On this point, Cheryl and I laugh . . . and agree.
Oftentimes it’s the very people who should understand communication, speech-language pathologist, who don’t understand how to communicate with a person with brain injury. Cheryl and I laugh and agree about this too. Although my brain injury occurred in 1977, way before SLPs were part of the recovery team, Cheryl received rehabilitation therapy. Her SLP wasn’t compassionate, didn’t make sure to write down instructions, didn’t slow down when speaking to her, and labeled her as non-compliant. I saw the same thing during clinical practicums as a speech-language pathology graduate student.
“I was aggressive and rude. She didn’t know that was a brain injury!” Cheryl was crying out for help, but the SLP couldn’t recognize or deal with brain injury symptoms.
When Cheryl and I talked via Skype this morning, separated by a continent with me in Virginia and her in Oregon, we were amazed, once again, by how simpatico persons with brain injury are. It is always a relief to be who you are, and it seems we can only do that with other persons with brain injury. And as SLPs, we could take it to another level. We could also talk about the profession we chose because of our interest in communication. It seems that the profession let us down.
This may be surprising or hard for the SLP to hear, because we are told, all the way through graduate school, that we have expertise in communication. Unfortunately, SLPs don’t communicate this to the patient. Unfortunately, SLPs often deal with patients who don’t want to be told they are disordered.
Cheryl had to resign from her clinical fellowship year before she had treated a single patient because it occurred to her that brain injury residuals would prevent her from doing a good job. After deciding to resign, no doubt a difficult decision, she thought more and more about the field. She didn’t like the fact that SLPs were always telling the patient what was wrong with them and never listening to the patient’s side of the story. When she was a patient, she was upset by the drumbeat of skills she lacked. She wanted to talk to the SLP about how it felt to have this and that problem with communication (she often lashed out at someone or became emotional), but the SLP never wanted to listen. Worksheet, worksheet, worksheet.
Cheryl attended Portland State University. Now, the school lets her say her piece to SLPs about communicating with people with disabilities, not just persons with brain injury. During her presentation, graduate students are asked to think about their biases toward those with brain injury or other disabilities. Do they think that their idea of normal communication skills is the only acceptable means of communication? Will they consider, for a moment, that some people with disabilities are communicating in the best way that they can? Can SLPs be flexible for a minute and accept disability? Can SLPs work with a person to do that individual’s best, even though it doesn’t quite measure up to 100 percent of normal?
Cheryl and I agree on the fact that SLPs often provide therapy, especially therapy for persons with brain injury that is based upon their gut instincts or best judgment and they don’t often have time to stay apprised of the latest research. Traditional worksheet therapy is not the best for persons with brain injury, who may consider it irrelevant. The SLP needs to spend more time explaining to the person with brain injury why they are drilling and practicing through worksheet after worksheet on attention or memory. In order to have buy-in, the SLP must respect the person, whose communication skills are frustrating him or her.
In addition, Cheryl talks to graduate students at PSU about other must-dos: talk slowly, name and write down specific steps (don’t just say “pace yourself”), and do tasks together or do tasks for the person with brain injury when the task is not helping to build a life skill.
Because I sense that traditional rehabilitation programs are not delivering what persons with brain injury need, and because Cheryl experienced lack of compassion from her SLP, I asked Cheryl what she thought would fix this problem. What’s the message we want to give to SLPs? She responded with a firm answer: SLPs need to communicate with persons with brain injury in a more straightforward way. The SLP is not the instant expert. The SLP should talk to the person with brain injury about how they can help and ask the person with brain injury to tell her what is needed to help improve communication. Don’t push “normal” as the best and only solution. “Flex a little!” says Cheryl.
“There is so much therapy that can be centered on things that are interesting to the patient,” says Cheryl. “Ask the patient, ‘what are you working on?’ and go from there.” Cheryl fells that SLPs are often afraid to speak to the person with brain injury on the level that is needed by the individual. All SLPs seem to want to do with persons with brain injury is to work on attention and memory planners.
Talk openly about symptoms and don’t worry about scope of practice. Refer the patient to others, if needed, but do help the person with brain injury communicate his or her needs. Perseveration on problems and lack of social skills are in the SLPs scope of practice, so consider the skills and don’t feel like you have to be the expert in solving all of the communicative content issues that come up. “Trust that the patient can handle the information you give. Ask the patient why he is non-compliant. Our job is to tell the person why he is doing what he is doing. The person with brain injury does have agency.”
The patient has feelings about his or her communication skills, even though not always able to express them or does not want to express them. It is the SLPs job to encourage communication and not allow the person with brain injury to carry concerns silently. As someone who has carried my concerns silently, to the point of suicidal ideation, I agree. SLPs can communicate the source of difficulties to the person with brain injury and relieve the stress of misunderstanding.
The job of the SLP is offer person-centered communication therapy. It may include the traditional worksheets at some point, but not until the person with brain injury understands why. If foisted upon the person with brain injury before he or she understands why or asks for help with a particular skill, the SLP is simply wasting everybody’s time.
Article based on an interview with Cheryl Green of Story Minders (Changing Your Mind about Ours) on May 28, 2015.