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Home > RNJ > 2011 > July/August > Aphasia Bill of Rights

Aphasia Bill of Rights
John Liechty

The author, who has lived with aphasia for more than 30 years, offers a personal perspective on the “Aphasia Bill of Rights,” adopted by the National Aphasia Association Board of Directors.

On my first day of work after graduate school, I had a “bleed” in my brain. I knew that my life would never be the same. I couldn’t speak. I couldn’t understand what people were saying. Something was wrong, but nobody told me what it was. It took 2 years for me to learn that I had aphasia and that this is something many other people also have to live with.

Then, I learned about the National Aphasia Association (NAA). NAA is a not-for-profit organization that promotes public education, research, rehabilitation, and support services for people with aphasia and their families. Headquartered in New York City, NAA provides advocacy and, through its website www.aphasia.org, access to resources for people with aphasia across the United States.

With information from NAA, I helped start a support group in my community for people with aphasia. I began speaking at conferences and writing articles. My passion is to build awareness and understanding about this condition.

I have been lucky because I am aware of my condition, but many people with aphasia still don’t know what it is. A stroke or a ruptured aneurysm happens once, but we live with aphasia day after day. It is always with us. I remember one day when a new coworker started talking to me at my workplace.

“What do you do?” she asked.

“I’m a housekeeper,” I said. “I have aphasia.”

“Oh,” she said. “You mean you had a stroke.”

She didn’t understand. Yes, I had a brain injury, but my struggle is much more than that. It is the daily reality of isolation associated with not having a voice. It is frustration, sometimes despair.

Several years ago, the NAA’s board of directors passed the “Aphasia Bill of Rights.” It describes what people with aphasia deserve.

  • You have the right to be told, as soon as it is determined, preferably by a speech-language pathologist (SLP), both orally and in writing, that you have “aphasia” and be given an explanation of the meaning of aphasia.

Many healthcare and social workers have a vague idea of what aphasia is. It is the loss of the ability to communicate caused by damage to the brain. It took 2 years for me to learn about my condition. No one should have to wait that long.

  • You have the right to be provided, upon release from the hospital, with written documentation that “aphasia” is part of your diagnosis.

People with aphasia have difficulty communicating, so it takes extra effort to give them a clear message. A woman with aphasia in my town never knew what her condition was or that there was support available for her. Speech pathologists can help describe the condition and possible therapies. That is why every hospital should have a speech pathologist.

  • You have the right to be told, both orally and in writing, that there are local resources available to [you], including aphasia community groups in [your] area, as well as national organizations such as the NAA.

Most people with aphasia will not fully recover their ability to communicate, but emotional healing or acceptance is still possible. Support groups for persons with aphasia are essential. Group members can talk and listen to each other at their own pace and know that the others understand. In a support group, people with aphasia experience acceptance that they can carry with them when they leave. The Goshen Community Aphasia Group traveled to Manhattan, NY, to have lunch with Japanese people with aphasia. We had interpreters to talk to the Japanese people. That was 15 years ago. Multicultural task forces are now truly viable.

  • You have the right to have access to outpatient therapy to the extent deemed appropriate by a qualified SLP.

In the first days after I sustained aphasia, I was lost. Luckily, therapists helped me find ways to deal with it. Little by little, we rebuilt my vocabulary, and I relearned the connection between words and objects. Music therapy was especially helpful for me. Too often patients with aphasia are discharged when there is no longer any physical danger related to their stroke or aneurism. Some people in my community never had any therapy for their aphasia. The doctors allowed families to take the patients home without suggesting any helpful resources. Because aphasia is usually permanent, patients and caregivers need tools to cope with this new reality.

  • You have the right to give your informed consent in any research project in which you are participating.

Researchers need to be particularly careful that people with aphasia understand what it means to be involved in a research project. A graduate school recently asked me to participate in an aphasia-related research project. The letter they sent was probably very clear, but it is hard for me to understand what I read. Researchers should involve caregivers, family, or friends, so that everyone understands what is going on.

  • You have the right to demand that accrediting healthcare agencies and facilities establish requirements for and competency in caring for people with aphasia.

Healthcare and social workers may not see the value in educating themselves about aphasia. Once I was at a hospital and the receptionist did not know the word “aphasia.” Sometimes even doctors, nurses, and social workers have only a vague idea of what it is. Aphasia should be part of the curriculum for nurses and social workers and part of hospital orientation.

  • You have the right to have access to information in [your] most functional language through a qualified professional or through an interpreter and/or printed material and access to culturally sensitive services when [you] speak a language different from English and/or are from an ethnically/culturally diverse background.

It should go without saying that everyone deserves communication in their own language. Almost no one with aphasia can completely escape its effects, but the Aphasia Bill of Rights can help them cope. People with aphasia deserve respect and consideration. Observing the rights of people with aphasia can improve life for the whole community.

You can access the NAA Aphasia Bill of Rights at www.aphasia.org/docs/bill%20of%20rights.pdf, or contact NAA at 350 Seventh Avenue, Suite 902, New York, NY 10001 or 800.922.4622 to request a copy.

About the Author

John Liechty, MSW, works as a housekeeper at Oaklawn Psychiatric Hospital. He has been active as an advisory board member and volunteer with National Aphasia Association and helped form the Goshen, IN, Community Aphasia Support Group. Since 2000, he has presented to regional and national health-related organizations about aphasia. More recently, working with several collaborators, he has published articles about aphasia in a variety of journals and periodicals. John received the 2009 Aphasia Advocacy Award from National Aphasia Association in recognition of his speaking and writing on behalf of people with aphasia. He was assisted by Donald Garber, a freelance writer and editor.