Communication Currents

Several months ago I was called to serve as a juror. My first response was “Wow! What am I to do? I have aphasia. How can I understand a trial?”

When I went to the courthouse on that day, I was the second person into the jury box. The judge told us about the jury selection process and the importance of serving on a jury. When he mentioned the word “disabilities,” I raised my hand. “I have a disability. I had a ruptured aneurysm 30 years ago. I am aphasic.” The judge called forward the lawyers for the defense and the prosecution, and, after they talked briefly, I was excused.

A few days later I heard that the jury found the defendant guilty after only 19 minutes. If I had been in the jury room, it would have taken a lot longer for me to understand the case and decide on the verdict. Would the rest of the jurors been patient with me? As my friend from National Aphasia Association wrote to me later, “The system is not adapted to those who have communication difficulties.”

I have lived with aphasia for more than 30 years. The brain injury damaged my communication pathways. I have learned to live with aphasia, but every day there are challenges and difficulties. With more than one million persons in America who live with aphasia, we need allies to help change the system.

What is aphasia? According to the website of the National Aphasia Association (NAA), “Aphasia is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing.”

No two people with aphasia are alike with respect to severity, former speech and language skills, or personality. But in all cases it is essential for the person to communicate as successfully as possible. Here are some suggestions from NAA to help communicate with a person with aphasia:

• Make sure you have the person's attention before communicating.

A simple greeting like “hello” or “how are you doing?” can get my attention and lead into a conversation. On the other hand, if someone comes up to me and starts talking, it takes awhile for me to catch up, and I may ask the person to start over.

• During conversation, minimize or eliminate background noise (such as television, radio, other people) as much as possible.

When I am in a crowd, especially a noisy crowd with lots of talking and commotion, and someone tries to speak with me, I am lost. When I am in a restaurant and the server starts talking while there is a hubbub around us, it is almost impossible for me to catch on. I can’t follow the conversation, because there is too much for my brain to handle.

• Keep communication simple but adult. Simplify your own sentence structure and reduce your own rate of speech. You don't need to speak louder than normal but do emphasize key words. Don't talk down to the person with aphasia.

Not even health professionals are immune from this! Sometimes during a question and answer period after one of my convention presentations, someone will ask a complicated question. It is frustrating and embarrassing both for me and the questioner when I ask to have the question repeated or have someone explain it to me. Simple straightforward sentences are best when speaking to persons with aphasia.

• Encourage and use other modes of communication (writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions) in addition to speech.

Eye contact and facial expressions are especially important for me. The impact of my brain injury is such that writing or drawing are not as helpful, but it can help other people with aphasia.

• Give people with aphasia time to talk and let them have a reasonable amount of time to respond. Avoid speaking for the person with aphasia except when necessary and ask permission before doing so.

I sing in the adult choir at my church. Singing is a wonderful way of communicating for me. But sometimes I have trouble understanding what the director is saying. I’m reluctant to ask a question, because that would take the time of the whole group. Usually I have a private conversation with a fellow tenor, and we can understand each other.

• Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.

A lot of people don’t understand that aphasia does not affect intelligence. I am still the person who completed a master’s of social work program before my brain injury. My problem is communicating—understanding what others say and expressing my thoughts. It is possible for me to engage in a stimulating conversation, but it takes commitment both for me and for the person I am with.

• Confirm that you are communicating successfully.

I was volunteering as a kitchen helper at our church. I asked the person in charge what I could do. She told me to put the toppings on the ham and pineapple pizza. I did what I thought was right, but she came back to me and said, “Take off some of the toppings, because there won’t be enough for all the other pizzas.” Since this was my first time doing this, I didn’t do it right. If the person in charge had taken more time to be sure I understood, things would have gone better.

• Expand speech with gesture and visual aids whenever possible. Repeat a statement when necessary.

I have real difficulty understanding numbers. My sister invited me to a birthday party for my mother. I thought I was to be at the restaurant at 5:45. I showed up a little early, at 5:30. The rest of the group came at 6:15. Even though I had asked my sister to repeat the time, I couldn’t comprehend. Telephone numbers too are very difficult for me. When someone leaves a message on my telephone and asks me to call them back, I usually have to ask someone else to interpret the number for me. This makes life a little complicated!

For more than ten years I have been making presentations at conventions of health-related organizations. I have also published articles about aphasia in various periodicals. One tool that has helped to make this possible is voice recognition software. I use it to read and compose email message and to draft articles. All of this is in pursuit of my passion: building awareness and understanding of aphasia.

There are many areas of our culture where persons with aphasia face barriers. The legal system is one example. NAA has a project to help emergency responders build bridges to the aphasia community. For National Aphasia Awareness month last year, the theme was “Is your business aphasia friendly?” Restaurants, banks, pharmacies—all these and many other businesses deal with persons who have aphasia, but most people do not know what aphasia is and how to communicate.

Professional communicators understand the importance of communication. I encourage you to become advocates for those who face communication challenges.