Health Literacy ♦ Effective Health Communication ♦ Effective Health Education
I believe these phrases all mean the same thing when working with people with intellectual and developmental disabilities. If you ask me to define them, I will tell you they mean, understandable and listening to understand.
Listening is not an easy skill to learn. True, there are seminars and courses that teach what is called “active listening.” It is often easy to spot: great eye contact, an open expression, and a lot of comments like, “tell me more,” “Mmmhmmm,” and “how did that make you feel?” For all the training in the world, if you are not honestly listening with the intent to hear what the person has to say, then it’s all a game. And, trust me, people with intellectual disabilities recognize a game player immediately. I’m pretty good at it, but the people I support are experts. They often make that judgement within the first 30 seconds…..and they’re right 99% of the time.
Listening, with the intent to hear, is a skill that takes time to learn. It can’t be taught. It comes from the heart rather than the head. It means clearing your mind of what you want a person to say; having no agenda; learning to be still and listen with your eyes, your ears, your mind, your heart.
These skills are absolutely essential for working with people who have IDD. Here’s why.
Research tells us, for instance, that people with Down syndrome of all ages understand more than they can express. I am relatively certain that this is true for most people with ID, and know it to be true for people who have any sort of troubles with speech such as apraxia or stuttering. I haven’t searched the literature outside of Down syndrome, but it makes sense to me that this is likely the case.
So what does that mean to us?
It means, as health care professionals, we best embrace the idea that the people we support understand everything.
Here’s a very poignant example. Recently, I was at the Special Olympics US National Games, working in the Healthy Athletes, Health Promotion Program. My role was to train other health care professionals in the Health Promotion area to set up and conduct screenings and health education activities. I do a little training around communication and understandability, sharing some things I’ve learned. During this event, I was charged with writing a storyboard for a training video on effective communication. It was a challenge.
At one point, we were talking with some athletes who volunteered to do some planned scenes for us. We taped a few folks sharing their answer to some targeted questions. Jessica Kizorek, the producer from Two Parrot Productions, asked Nick, one of the athlete volunteers, the following question:
“What does it mean to you for people not to use the “r-word”?”
Nick is 22. A year older than my own son. He’s a great guy with a huge heart. When she asked that question, you could see a visible reaction. So I offered something like the following:
“Nick, dont’ think about the times people have used that word and hurt your feelings. Think about how good you feel when people know NOT to use that word and are respectful to you. Tell them why you want them to use nice language.”
His answer is heart-wrenching.
Among other things, Nick beautifully illustrates this difference between receptive and expressive language. You’ll need to watch the clip a few times to get past the strong emotion you will feel to be able to see what I mean about expressive and receptive language.
Interview with Nick
Watch Nick here.
Pretty powerful, isn’t he? Trust me, there wasn’t a dry eye.
Watch Nick again.
This time, watch the nonverbal communication Nick shares with you.
What do you hear?
This is what I hear:
- He knows his message is important. He feels a responsibility regarding what he is going to say.
- Hurt. Extreme hurt.
- He has a story – something he is thinking about that he wants to say – that he can’t find the words for. Do you see it? It is visible.
As he looks at the camera, and the three of us in front of him, his mind is going a mile a minute. He’s got a BIG MESSAGE to share.
- He can’t find the words. Or, he can’t create the words. So what he says comes out in one or two-word blurts. Some of this is emotion, of course, but not all of it.
You can see it at the second sentence before he is overcome by emotion.
Some of this is because we asked him to say something that is not a part of the moment. Nick is really a very good communicator! He also illustrates for us what can happen when we are asking questions. Isn’t that what happens during most interactions with health care professionals? We ask questions. We pry. We have an agenda about what we want to know. A person who is typically a very fluid and free communicator may have trouble retrieving the words to share their message when asked to “perform” for the sake of information gathering.
What can we do to make it easier?
Use visual tools. A person may be able to select the answer they want from a visual cue (photo, drawing, etc) more easily than processing your question, formulating a thought about it, and then formulating and expressing the answer.
This concept is true whether you’re seeking a verbal reply, a reply with a communication device, use of sign language, a response to a visual cue, or any action based on your message. For visual and augmented communicators, you may see something as subtle as the tapping of a finger near one of the icons as a hint to their message. Sometimes, saying or doing nothing is a clear communication. I know a number of people who say “yes,” but say nothing and do nothing for “no.”
So this week, take some time to practice listening with the intent to hear.
I’d love to hear what happens. Ask yourself:
- What did I do differently?
- How did it feel?
- How did I feel about the information I received?
- Was it worth your time and effort?
I’m looking forward to hearing from you!
2010 © Joan Guthrie Medlen, M.ED, RD, LD All Rights Reserved Email for permission